{"id":"https://openalex.org/W4403089953","doi":"https://doi.org/10.1212/nxg.0000000000200192","title":"Practical Approach to Longitudinal Neurologic Care of Adults With X-Linked Adrenoleukodystrophy and Adrenomyeloneuropathy","display_name":"Practical Approach to Longitudinal Neurologic Care of Adults With X-Linked Adrenoleukodystrophy and Adrenomyeloneuropathy","publication_year":2024,"publication_date":"2024-10-01","ids":{"openalex":"https://openalex.org/W4403089953","doi":"https://doi.org/10.1212/nxg.0000000000200192","pmid":"https://pubmed.ncbi.nlm.nih.gov/39372123","pmcid":"https://www.ncbi.nlm.nih.gov/pmc/articles/11450743"},"language":"en","primary_location":{"id":"doi:10.1212/nxg.0000000000200192","doi":"https://doi.org/10.1212/nxg.0000000000200192","is_oa":true,"landing_page_url":"https://doi.org/10.1212/nxg.0000000000200192","pdf_url":null,"source":{"id":"https://openalex.org/S2764805357","display_name":"Neurology Genetics","issn_l":"2376-7839","issn":["2376-7839"],"is_oa":true,"is_in_doaj":true,"is_core":true,"listed_in":["cwts-core","doaj","dongbi-b","doyens","jufo-1","ki-jl-1","norway-1","oarl","poland-100","russia-white-list-2","vabb-shw"],"host_organization":"https://openalex.org/P4310318547","host_organization_name":"Wolters Kluwer","host_organization_lineage":["https://openalex.org/P4310318547"],"host_organization_lineage_names":["Wolters Kluwer"],"type":"journal"},"license":"cc-by-nc-nd","license_id":"https://openalex.org/licenses/cc-by-nc-nd","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Neurology Genetics","raw_type":"journal-article"},"volume":null,"type":"review","indexed_in":["crossref","doaj","pubmed"],"open_access":{"is_oa":true,"oa_status":"gold","oa_url":"https://doi.org/10.1212/nxg.0000000000200192","any_repository_has_fulltext":true},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5039621445","display_name":"Alexandra B. Kornbluh","orcid":"https://orcid.org/0000-0002-7880-918X","observed_orcids":["https://orcid.org/0000-0002-7880-918X"]},"institutions":[{"id":"https://openalex.org/I1298154867","display_name":"Kennedy Krieger Institute","ror":"https://ror.org/05q6tgt32","country_code":"US","type":"nonprofit","lineage":["https://openalex.org/I1298154867"]},{"id":"https://openalex.org/I1335321130","display_name":"Children's Hospital of Philadelphia","ror":"https://ror.org/01z7r7q48","country_code":"US","type":"funder","lineage":["https://openalex.org/I1335321130"]},{"id":"https://openalex.org/I1336742384","display_name":"Children's National","ror":"https://ror.org/03wa2q724","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I1336742384"]},{"id":"https://openalex.org/I145311948","display_name":"Johns Hopkins University","ror":"https://ror.org/00za53h95","country_code":"US","type":"education","lineage":["https://openalex.org/I145311948"]},{"id":"https://openalex.org/I193531525","display_name":"George Washington University","ror":"https://ror.org/00y4zzh67","country_code":"US","type":"education","lineage":["https://openalex.org/I193531525"]},{"id":"https://openalex.org/I2799853436","display_name":"Johns Hopkins Medicine","ror":"https://ror.org/037zgn354","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I2799853436"]},{"id":"https://openalex.org/I79576946","display_name":"University of Pennsylvania","ror":"https://ror.org/00b30xv10","country_code":"US","type":"education","lineage":["https://openalex.org/I79576946"]}],"countries":["US"],"is_corresponding":true,"raw_author_name":"Alexandra B. Kornbluh","raw_affiliation_strings":["From the Division of Neurology (A.B.K.), Children\u2019s National Hospital, George Washington University Medical School, Washington DC; Division of Neurology (A.B.), Neurogenetics Translational Center of Excellence, University of Pennsylvania, Philadelphia; Kennedy Krieger Institute and The Johns Hopkins University School of Medicine (A.F.), Baltimore, MD; Division of Neurology (A.V., L.A.A.), Children\u2019s Hospital of Philadelphia, Perelman School of Medicine, University of Pennsylvania; Department of"],"raw_orcid":"https://orcid.org/0000-0002-7880-918X","affiliations":[{"raw_affiliation_string":"From the Division of Neurology (A.B.K.), Children\u2019s National Hospital, George Washington University Medical School, Washington DC; Division of Neurology (A.B.), Neurogenetics Translational Center of Excellence, University of Pennsylvania, Philadelphia; Kennedy Krieger Institute and The Johns Hopkins University School of Medicine (A.F.), Baltimore, MD; Division of Neurology (A.V., L.A.A.), Children\u2019s Hospital of Philadelphia, Perelman School of Medicine, University of Pennsylvania; Department of","institution_ids":["https://openalex.org/I1298154867","https://openalex.org/I1335321130","https://openalex.org/I1336742384","https://openalex.org/I145311948","https://openalex.org/I193531525","https://openalex.org/I2799853436","https://openalex.org/I79576946"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5034688719","display_name":"Aaron Baldwin","orcid":"https://orcid.org/0000-0002-8970-1270","observed_orcids":["https://orcid.org/0000-0002-8970-1270"]},"institutions":[{"id":"https://openalex.org/I1298154867","display_name":"Kennedy Krieger Institute","ror":"https://ror.org/05q6tgt32","country_code":"US","type":"nonprofit","lineage":["https://openalex.org/I1298154867"]},{"id":"https://openalex.org/I1335321130","display_name":"Children's Hospital of Philadelphia","ror":"https://ror.org/01z7r7q48","country_code":"US","type":"funder","lineage":["https://openalex.org/I1335321130"]},{"id":"https://openalex.org/I1336742384","display_name":"Children's National","ror":"https://ror.org/03wa2q724","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I1336742384"]},{"id":"https://openalex.org/I145311948","display_name":"Johns Hopkins University","ror":"https://ror.org/00za53h95","country_code":"US","type":"education","lineage":["https://openalex.org/I145311948"]},{"id":"https://openalex.org/I193531525","display_name":"George Washington University","ror":"https://ror.org/00y4zzh67","country_code":"US","type":"education","lineage":["https://openalex.org/I193531525"]},{"id":"https://openalex.org/I2799853436","display_name":"Johns Hopkins Medicine","ror":"https://ror.org/037zgn354","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I2799853436"]},{"id":"https://openalex.org/I79576946","display_name":"University of Pennsylvania","ror":"https://ror.org/00b30xv10","country_code":"US","type":"education","lineage":["https://openalex.org/I79576946"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Aaron Baldwin","raw_affiliation_strings":["From the Division of Neurology (A.B.K.), Children\u2019s National Hospital, George Washington University Medical School, Washington DC; Division of Neurology (A.B.), Neurogenetics Translational Center of Excellence, University of Pennsylvania, Philadelphia; Kennedy Krieger Institute and The Johns Hopkins University School of Medicine (A.F.), Baltimore, MD; Division of Neurology (A.V., L.A.A.), Children\u2019s Hospital of Philadelphia, Perelman School of Medicine, University of Pennsylvania; Department of"],"raw_orcid":"https://orcid.org/0000-0002-8970-1270","affiliations":[{"raw_affiliation_string":"From the Division of Neurology (A.B.K.), Children\u2019s National Hospital, George Washington University Medical School, Washington DC; Division of Neurology (A.B.), Neurogenetics Translational Center of Excellence, University of Pennsylvania, Philadelphia; Kennedy Krieger Institute and The Johns Hopkins University School of Medicine (A.F.), Baltimore, MD; Division of Neurology (A.V., L.A.A.), Children\u2019s Hospital of Philadelphia, Perelman School of Medicine, University of Pennsylvania; Department of","institution_ids":["https://openalex.org/I1298154867","https://openalex.org/I1335321130","https://openalex.org/I1336742384","https://openalex.org/I145311948","https://openalex.org/I193531525","https://openalex.org/I2799853436","https://openalex.org/I79576946"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5025057760","display_name":"Ali S. Fatemi","orcid":"https://orcid.org/0000-0003-4116-6990","observed_orcids":["https://orcid.org/0000-0003-4116-6990"]},"institutions":[{"id":"https://openalex.org/I1298154867","display_name":"Kennedy Krieger Institute","ror":"https://ror.org/05q6tgt32","country_code":"US","type":"nonprofit","lineage":["https://openalex.org/I1298154867"]},{"id":"https://openalex.org/I1335321130","display_name":"Children's Hospital of Philadelphia","ror":"https://ror.org/01z7r7q48","country_code":"US","type":"funder","lineage":["https://openalex.org/I1335321130"]},{"id":"https://openalex.org/I1336742384","display_name":"Children's National","ror":"https://ror.org/03wa2q724","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I1336742384"]},{"id":"https://openalex.org/I145311948","display_name":"Johns Hopkins University","ror":"https://ror.org/00za53h95","country_code":"US","type":"education","lineage":["https://openalex.org/I145311948"]},{"id":"https://openalex.org/I193531525","display_name":"George Washington University","ror":"https://ror.org/00y4zzh67","country_code":"US","type":"education","lineage":["https://openalex.org/I193531525"]},{"id":"https://openalex.org/I2799853436","display_name":"Johns Hopkins Medicine","ror":"https://ror.org/037zgn354","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I2799853436"]},{"id":"https://openalex.org/I79576946","display_name":"University of Pennsylvania","ror":"https://ror.org/00b30xv10","country_code":"US","type":"education","lineage":["https://openalex.org/I79576946"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Ali Fatemi","raw_affiliation_strings":["From the Division of Neurology (A.B.K.), Children\u2019s National Hospital, George Washington University Medical School, Washington DC; Division of Neurology (A.B.), Neurogenetics Translational Center of Excellence, University of Pennsylvania, Philadelphia; Kennedy Krieger Institute and The Johns Hopkins University School of Medicine (A.F.), Baltimore, MD; Division of Neurology (A.V., L.A.A.), Children\u2019s Hospital of Philadelphia, Perelman School of Medicine, University of Pennsylvania; Department of"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"From the Division of Neurology (A.B.K.), Children\u2019s National Hospital, George Washington University Medical School, Washington DC; Division of Neurology (A.B.), Neurogenetics Translational Center of Excellence, University of Pennsylvania, Philadelphia; Kennedy Krieger Institute and The Johns Hopkins University School of Medicine (A.F.), Baltimore, MD; Division of Neurology (A.V., L.A.A.), Children\u2019s Hospital of Philadelphia, Perelman School of Medicine, University of Pennsylvania; Department of","institution_ids":["https://openalex.org/I1298154867","https://openalex.org/I1335321130","https://openalex.org/I1336742384","https://openalex.org/I145311948","https://openalex.org/I193531525","https://openalex.org/I2799853436","https://openalex.org/I79576946"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5013089390","display_name":"Adeline L. Vanderver","orcid":"https://orcid.org/0000-0002-6290-6751","observed_orcids":["https://orcid.org/0000-0002-6290-6751"]},"institutions":[{"id":"https://openalex.org/I1298154867","display_name":"Kennedy Krieger Institute","ror":"https://ror.org/05q6tgt32","country_code":"US","type":"nonprofit","lineage":["https://openalex.org/I1298154867"]},{"id":"https://openalex.org/I1335321130","display_name":"Children's Hospital of Philadelphia","ror":"https://ror.org/01z7r7q48","country_code":"US","type":"funder","lineage":["https://openalex.org/I1335321130"]},{"id":"https://openalex.org/I1336742384","display_name":"Children's National","ror":"https://ror.org/03wa2q724","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I1336742384"]},{"id":"https://openalex.org/I145311948","display_name":"Johns Hopkins University","ror":"https://ror.org/00za53h95","country_code":"US","type":"education","lineage":["https://openalex.org/I145311948"]},{"id":"https://openalex.org/I193531525","display_name":"George Washington University","ror":"https://ror.org/00y4zzh67","country_code":"US","type":"education","lineage":["https://openalex.org/I193531525"]},{"id":"https://openalex.org/I2799853436","display_name":"Johns Hopkins Medicine","ror":"https://ror.org/037zgn354","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I2799853436"]},{"id":"https://openalex.org/I79576946","display_name":"University of Pennsylvania","ror":"https://ror.org/00b30xv10","country_code":"US","type":"education","lineage":["https://openalex.org/I79576946"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Adeline Vanderver","raw_affiliation_strings":["From the Division of Neurology (A.B.K.), Children\u2019s National Hospital, George Washington University Medical School, Washington DC; Division of Neurology (A.B.), Neurogenetics Translational Center of Excellence, University of Pennsylvania, Philadelphia; Kennedy Krieger Institute and The Johns Hopkins University School of Medicine (A.F.), Baltimore, MD; Division of Neurology (A.V., L.A.A.), Children\u2019s Hospital of Philadelphia, Perelman School of Medicine, University of Pennsylvania; Department of"],"raw_orcid":"https://orcid.org/0000-0002-6290-6751","affiliations":[{"raw_affiliation_string":"From the Division of Neurology (A.B.K.), Children\u2019s National Hospital, George Washington University Medical School, Washington DC; Division of Neurology (A.B.), Neurogenetics Translational Center of Excellence, University of Pennsylvania, Philadelphia; Kennedy Krieger Institute and The Johns Hopkins University School of Medicine (A.F.), Baltimore, MD; Division of Neurology (A.V., L.A.A.), Children\u2019s Hospital of Philadelphia, Perelman School of Medicine, University of Pennsylvania; Department of","institution_ids":["https://openalex.org/I1298154867","https://openalex.org/I1335321130","https://openalex.org/I1336742384","https://openalex.org/I145311948","https://openalex.org/I193531525","https://openalex.org/I2799853436","https://openalex.org/I79576946"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5004600852","display_name":"Laura Ann Adang","orcid":"https://orcid.org/0000-0002-8454-1116","observed_orcids":["https://orcid.org/0000-0002-8454-1116"]},"institutions":[{"id":"https://openalex.org/I1298154867","display_name":"Kennedy Krieger Institute","ror":"https://ror.org/05q6tgt32","country_code":"US","type":"nonprofit","lineage":["https://openalex.org/I1298154867"]},{"id":"https://openalex.org/I1335321130","display_name":"Children's Hospital of Philadelphia","ror":"https://ror.org/01z7r7q48","country_code":"US","type":"funder","lineage":["https://openalex.org/I1335321130"]},{"id":"https://openalex.org/I1336742384","display_name":"Children's National","ror":"https://ror.org/03wa2q724","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I1336742384"]},{"id":"https://openalex.org/I145311948","display_name":"Johns Hopkins University","ror":"https://ror.org/00za53h95","country_code":"US","type":"education","lineage":["https://openalex.org/I145311948"]},{"id":"https://openalex.org/I193531525","display_name":"George Washington University","ror":"https://ror.org/00y4zzh67","country_code":"US","type":"education","lineage":["https://openalex.org/I193531525"]},{"id":"https://openalex.org/I2799853436","display_name":"Johns Hopkins Medicine","ror":"https://ror.org/037zgn354","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I2799853436"]},{"id":"https://openalex.org/I79576946","display_name":"University of Pennsylvania","ror":"https://ror.org/00b30xv10","country_code":"US","type":"education","lineage":["https://openalex.org/I79576946"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Laura A. Adang","raw_affiliation_strings":["From the Division of Neurology (A.B.K.), Children\u2019s National Hospital, George Washington University Medical School, Washington DC; Division of Neurology (A.B.), Neurogenetics Translational Center of Excellence, University of Pennsylvania, Philadelphia; Kennedy Krieger Institute and The Johns Hopkins University School of Medicine (A.F.), Baltimore, MD; Division of Neurology (A.V., L.A.A.), Children\u2019s Hospital of Philadelphia, Perelman School of Medicine, University of Pennsylvania; Department of"],"raw_orcid":"https://orcid.org/0000-0002-8454-1116","affiliations":[{"raw_affiliation_string":"From the Division of Neurology (A.B.K.), Children\u2019s National Hospital, George Washington University Medical School, Washington DC; Division of Neurology (A.B.), Neurogenetics Translational Center of Excellence, University of Pennsylvania, Philadelphia; Kennedy Krieger Institute and The Johns Hopkins University School of Medicine (A.F.), Baltimore, MD; Division of Neurology (A.V., L.A.A.), Children\u2019s Hospital of Philadelphia, Perelman School of Medicine, University of Pennsylvania; Department of","institution_ids":["https://openalex.org/I1298154867","https://openalex.org/I1335321130","https://openalex.org/I1336742384","https://openalex.org/I145311948","https://openalex.org/I193531525","https://openalex.org/I2799853436","https://openalex.org/I79576946"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5065803544","display_name":"Keith P. van Haren","orcid":"https://orcid.org/0000-0002-0233-9361","observed_orcids":["https://orcid.org/0000-0002-0233-9361"]},"institutions":[{"id":"https://openalex.org/I1298154867","display_name":"Kennedy Krieger Institute","ror":"https://ror.org/05q6tgt32","country_code":"US","type":"nonprofit","lineage":["https://openalex.org/I1298154867"]},{"id":"https://openalex.org/I1335321130","display_name":"Children's Hospital of Philadelphia","ror":"https://ror.org/01z7r7q48","country_code":"US","type":"funder","lineage":["https://openalex.org/I1335321130"]},{"id":"https://openalex.org/I1336742384","display_name":"Children's National","ror":"https://ror.org/03wa2q724","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I1336742384"]},{"id":"https://openalex.org/I145311948","display_name":"Johns Hopkins University","ror":"https://ror.org/00za53h95","country_code":"US","type":"education","lineage":["https://openalex.org/I145311948"]},{"id":"https://openalex.org/I193531525","display_name":"George Washington University","ror":"https://ror.org/00y4zzh67","country_code":"US","type":"education","lineage":["https://openalex.org/I193531525"]},{"id":"https://openalex.org/I2799853436","display_name":"Johns Hopkins Medicine","ror":"https://ror.org/037zgn354","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I2799853436"]},{"id":"https://openalex.org/I79576946","display_name":"University of Pennsylvania","ror":"https://ror.org/00b30xv10","country_code":"US","type":"education","lineage":["https://openalex.org/I79576946"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Keith Van Haren","raw_affiliation_strings":["From the Division of Neurology (A.B.K.), Children\u2019s National Hospital, George Washington University Medical School, Washington DC; Division of Neurology (A.B.), Neurogenetics Translational Center of Excellence, University of Pennsylvania, Philadelphia; Kennedy Krieger Institute and The Johns Hopkins University School of Medicine (A.F.), Baltimore, MD; Division of Neurology (A.V., L.A.A.), Children\u2019s Hospital of Philadelphia, Perelman School of Medicine, University of Pennsylvania; Department of"],"raw_orcid":"https://orcid.org/0000-0002-0233-9361","affiliations":[{"raw_affiliation_string":"From the Division of Neurology (A.B.K.), Children\u2019s National Hospital, George Washington University Medical School, Washington DC; Division of Neurology (A.B.), Neurogenetics Translational Center of Excellence, University of Pennsylvania, Philadelphia; Kennedy Krieger Institute and The Johns Hopkins University School of Medicine (A.F.), Baltimore, MD; Division of Neurology (A.V., L.A.A.), Children\u2019s Hospital of Philadelphia, Perelman School of Medicine, University of Pennsylvania; Department of","institution_ids":["https://openalex.org/I1298154867","https://openalex.org/I1335321130","https://openalex.org/I1336742384","https://openalex.org/I145311948","https://openalex.org/I193531525","https://openalex.org/I2799853436","https://openalex.org/I79576946"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5024738169","display_name":"Jacinda B. Sampson","orcid":"https://orcid.org/0000-0002-4991-6496","observed_orcids":["https://orcid.org/0000-0002-4991-6496"]},"institutions":[{"id":"https://openalex.org/I1298154867","display_name":"Kennedy Krieger Institute","ror":"https://ror.org/05q6tgt32","country_code":"US","type":"nonprofit","lineage":["https://openalex.org/I1298154867"]},{"id":"https://openalex.org/I1335321130","display_name":"Children's Hospital of Philadelphia","ror":"https://ror.org/01z7r7q48","country_code":"US","type":"funder","lineage":["https://openalex.org/I1335321130"]},{"id":"https://openalex.org/I1336742384","display_name":"Children's National","ror":"https://ror.org/03wa2q724","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I1336742384"]},{"id":"https://openalex.org/I145311948","display_name":"Johns Hopkins University","ror":"https://ror.org/00za53h95","country_code":"US","type":"education","lineage":["https://openalex.org/I145311948"]},{"id":"https://openalex.org/I193531525","display_name":"George Washington University","ror":"https://ror.org/00y4zzh67","country_code":"US","type":"education","lineage":["https://openalex.org/I193531525"]},{"id":"https://openalex.org/I2799853436","display_name":"Johns Hopkins Medicine","ror":"https://ror.org/037zgn354","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I2799853436"]},{"id":"https://openalex.org/I79576946","display_name":"University of Pennsylvania","ror":"https://ror.org/00b30xv10","country_code":"US","type":"education","lineage":["https://openalex.org/I79576946"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Jacinda Sampson","raw_affiliation_strings":["From the Division of Neurology (A.B.K.), Children\u2019s National Hospital, George Washington University Medical School, Washington DC; Division of Neurology (A.B.), Neurogenetics Translational Center of Excellence, University of Pennsylvania, Philadelphia; Kennedy Krieger Institute and The Johns Hopkins University School of Medicine (A.F.), Baltimore, MD; Division of Neurology (A.V., L.A.A.), Children\u2019s Hospital of Philadelphia, Perelman School of Medicine, University of Pennsylvania; Department of"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"From the Division of Neurology (A.B.K.), Children\u2019s National Hospital, George Washington University Medical School, Washington DC; Division of Neurology (A.B.), Neurogenetics Translational Center of Excellence, University of Pennsylvania, Philadelphia; Kennedy Krieger Institute and The Johns Hopkins University School of Medicine (A.F.), Baltimore, MD; Division of Neurology (A.V., L.A.A.), Children\u2019s Hospital of Philadelphia, Perelman School of Medicine, University of Pennsylvania; Department of","institution_ids":["https://openalex.org/I1298154867","https://openalex.org/I1335321130","https://openalex.org/I1336742384","https://openalex.org/I145311948","https://openalex.org/I193531525","https://openalex.org/I2799853436","https://openalex.org/I79576946"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5036919823","display_name":"Florian Eichler","orcid":"https://orcid.org/0000-0001-6836-1089","observed_orcids":["https://orcid.org/0000-0001-6836-1089","https://orcid.org/0009-0001-2878-9758"]},"institutions":[{"id":"https://openalex.org/I1298154867","display_name":"Kennedy Krieger Institute","ror":"https://ror.org/05q6tgt32","country_code":"US","type":"nonprofit","lineage":["https://openalex.org/I1298154867"]},{"id":"https://openalex.org/I1335321130","display_name":"Children's Hospital of Philadelphia","ror":"https://ror.org/01z7r7q48","country_code":"US","type":"funder","lineage":["https://openalex.org/I1335321130"]},{"id":"https://openalex.org/I1336742384","display_name":"Children's National","ror":"https://ror.org/03wa2q724","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I1336742384"]},{"id":"https://openalex.org/I145311948","display_name":"Johns Hopkins University","ror":"https://ror.org/00za53h95","country_code":"US","type":"education","lineage":["https://openalex.org/I145311948"]},{"id":"https://openalex.org/I193531525","display_name":"George Washington University","ror":"https://ror.org/00y4zzh67","country_code":"US","type":"education","lineage":["https://openalex.org/I193531525"]},{"id":"https://openalex.org/I2799853436","display_name":"Johns Hopkins Medicine","ror":"https://ror.org/037zgn354","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I2799853436"]},{"id":"https://openalex.org/I79576946","display_name":"University of Pennsylvania","ror":"https://ror.org/00b30xv10","country_code":"US","type":"education","lineage":["https://openalex.org/I79576946"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Florian S. Eichler","raw_affiliation_strings":["From the Division of Neurology (A.B.K.), Children\u2019s National Hospital, George Washington University Medical School, Washington DC; Division of Neurology (A.B.), Neurogenetics Translational Center of Excellence, University of Pennsylvania, Philadelphia; Kennedy Krieger Institute and The Johns Hopkins University School of Medicine (A.F.), Baltimore, MD; Division of Neurology (A.V., L.A.A.), Children\u2019s Hospital of Philadelphia, Perelman School of Medicine, University of Pennsylvania; Department of"],"raw_orcid":"https://orcid.org/0000-0001-6836-1089","affiliations":[{"raw_affiliation_string":"From the Division of Neurology (A.B.K.), Children\u2019s National Hospital, George Washington University Medical School, Washington DC; Division of Neurology (A.B.), Neurogenetics Translational Center of Excellence, University of Pennsylvania, Philadelphia; Kennedy Krieger Institute and The Johns Hopkins University School of Medicine (A.F.), Baltimore, MD; Division of Neurology (A.V., L.A.A.), Children\u2019s Hospital of Philadelphia, Perelman School of Medicine, University of Pennsylvania; Department of","institution_ids":["https://openalex.org/I1298154867","https://openalex.org/I1335321130","https://openalex.org/I1336742384","https://openalex.org/I145311948","https://openalex.org/I193531525","https://openalex.org/I2799853436","https://openalex.org/I79576946"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5044265822","display_name":"Reza Sadjadi","orcid":"https://orcid.org/0000-0003-3829-6030","observed_orcids":["https://orcid.org/0000-0003-3829-6030"]},"institutions":[{"id":"https://openalex.org/I1298154867","display_name":"Kennedy Krieger Institute","ror":"https://ror.org/05q6tgt32","country_code":"US","type":"nonprofit","lineage":["https://openalex.org/I1298154867"]},{"id":"https://openalex.org/I1335321130","display_name":"Children's Hospital of Philadelphia","ror":"https://ror.org/01z7r7q48","country_code":"US","type":"funder","lineage":["https://openalex.org/I1335321130"]},{"id":"https://openalex.org/I1336742384","display_name":"Children's National","ror":"https://ror.org/03wa2q724","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I1336742384"]},{"id":"https://openalex.org/I145311948","display_name":"Johns Hopkins University","ror":"https://ror.org/00za53h95","country_code":"US","type":"education","lineage":["https://openalex.org/I145311948"]},{"id":"https://openalex.org/I193531525","display_name":"George Washington University","ror":"https://ror.org/00y4zzh67","country_code":"US","type":"education","lineage":["https://openalex.org/I193531525"]},{"id":"https://openalex.org/I2799853436","display_name":"Johns Hopkins Medicine","ror":"https://ror.org/037zgn354","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I2799853436"]},{"id":"https://openalex.org/I79576946","display_name":"University of Pennsylvania","ror":"https://ror.org/00b30xv10","country_code":"US","type":"education","lineage":["https://openalex.org/I79576946"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Reza Sadjadi","raw_affiliation_strings":["From the Division of Neurology (A.B.K.), Children\u2019s National Hospital, George Washington University Medical School, Washington DC; Division of Neurology (A.B.), Neurogenetics Translational Center of Excellence, University of Pennsylvania, Philadelphia; Kennedy Krieger Institute and The Johns Hopkins University School of Medicine (A.F.), Baltimore, MD; Division of Neurology (A.V., L.A.A.), Children\u2019s Hospital of Philadelphia, Perelman School of Medicine, University of Pennsylvania; Department of"],"raw_orcid":"https://orcid.org/0000-0003-3829-6030","affiliations":[{"raw_affiliation_string":"From the Division of Neurology (A.B.K.), Children\u2019s National Hospital, George Washington University Medical School, Washington DC; Division of Neurology (A.B.), Neurogenetics Translational Center of Excellence, University of Pennsylvania, Philadelphia; Kennedy Krieger Institute and The Johns Hopkins University School of Medicine (A.F.), Baltimore, MD; Division of Neurology (A.V., L.A.A.), Children\u2019s Hospital of Philadelphia, Perelman School of Medicine, University of Pennsylvania; Department of","institution_ids":["https://openalex.org/I1298154867","https://openalex.org/I1335321130","https://openalex.org/I1336742384","https://openalex.org/I145311948","https://openalex.org/I193531525","https://openalex.org/I2799853436","https://openalex.org/I79576946"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5057253916","display_name":"Marc Engelen","orcid":"https://orcid.org/0000-0002-5346-8497","observed_orcids":["https://orcid.org/0000-0002-5346-8497"]},"institutions":[{"id":"https://openalex.org/I1298154867","display_name":"Kennedy Krieger Institute","ror":"https://ror.org/05q6tgt32","country_code":"US","type":"nonprofit","lineage":["https://openalex.org/I1298154867"]},{"id":"https://openalex.org/I1335321130","display_name":"Children's Hospital of Philadelphia","ror":"https://ror.org/01z7r7q48","country_code":"US","type":"funder","lineage":["https://openalex.org/I1335321130"]},{"id":"https://openalex.org/I1336742384","display_name":"Children's National","ror":"https://ror.org/03wa2q724","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I1336742384"]},{"id":"https://openalex.org/I145311948","display_name":"Johns Hopkins University","ror":"https://ror.org/00za53h95","country_code":"US","type":"education","lineage":["https://openalex.org/I145311948"]},{"id":"https://openalex.org/I193531525","display_name":"George Washington University","ror":"https://ror.org/00y4zzh67","country_code":"US","type":"education","lineage":["https://openalex.org/I193531525"]},{"id":"https://openalex.org/I2799853436","display_name":"Johns Hopkins Medicine","ror":"https://ror.org/037zgn354","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I2799853436"]},{"id":"https://openalex.org/I79576946","display_name":"University of Pennsylvania","ror":"https://ror.org/00b30xv10","country_code":"US","type":"education","lineage":["https://openalex.org/I79576946"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Marc Engelen","raw_affiliation_strings":["From the Division of Neurology (A.B.K.), Children\u2019s National Hospital, George Washington University Medical School, Washington DC; Division of Neurology (A.B.), Neurogenetics Translational Center of Excellence, University of Pennsylvania, Philadelphia; Kennedy Krieger Institute and The Johns Hopkins University School of Medicine (A.F.), Baltimore, MD; Division of Neurology (A.V., L.A.A.), Children\u2019s Hospital of Philadelphia, Perelman School of Medicine, University of Pennsylvania; Department of"],"raw_orcid":"https://orcid.org/0000-0002-5346-8497","affiliations":[{"raw_affiliation_string":"From the Division of Neurology (A.B.K.), Children\u2019s National Hospital, George Washington University Medical School, Washington DC; Division of Neurology (A.B.), Neurogenetics Translational Center of Excellence, University of Pennsylvania, Philadelphia; Kennedy Krieger Institute and The Johns Hopkins University School of Medicine (A.F.), Baltimore, MD; Division of Neurology (A.V., L.A.A.), Children\u2019s Hospital of Philadelphia, Perelman School of Medicine, University of Pennsylvania; Department of","institution_ids":["https://openalex.org/I1298154867","https://openalex.org/I1335321130","https://openalex.org/I1336742384","https://openalex.org/I145311948","https://openalex.org/I193531525","https://openalex.org/I2799853436","https://openalex.org/I79576946"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5061426453","display_name":"Jennifer L. Orthmann\u2010Murphy","orcid":"https://orcid.org/0000-0002-2909-1722","observed_orcids":["https://orcid.org/0000-0002-2909-1722"]},"institutions":[{"id":"https://openalex.org/I1298154867","display_name":"Kennedy Krieger Institute","ror":"https://ror.org/05q6tgt32","country_code":"US","type":"nonprofit","lineage":["https://openalex.org/I1298154867"]},{"id":"https://openalex.org/I1335321130","display_name":"Children's Hospital of Philadelphia","ror":"https://ror.org/01z7r7q48","country_code":"US","type":"funder","lineage":["https://openalex.org/I1335321130"]},{"id":"https://openalex.org/I1336742384","display_name":"Children's National","ror":"https://ror.org/03wa2q724","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I1336742384"]},{"id":"https://openalex.org/I145311948","display_name":"Johns Hopkins University","ror":"https://ror.org/00za53h95","country_code":"US","type":"education","lineage":["https://openalex.org/I145311948"]},{"id":"https://openalex.org/I193531525","display_name":"George Washington University","ror":"https://ror.org/00y4zzh67","country_code":"US","type":"education","lineage":["https://openalex.org/I193531525"]},{"id":"https://openalex.org/I2799853436","display_name":"Johns Hopkins Medicine","ror":"https://ror.org/037zgn354","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I2799853436"]},{"id":"https://openalex.org/I79576946","display_name":"University of Pennsylvania","ror":"https://ror.org/00b30xv10","country_code":"US","type":"education","lineage":["https://openalex.org/I79576946"]}],"countries":["US"],"is_corresponding":true,"raw_author_name":"Jennifer L. Orthmann-Murphy","raw_affiliation_strings":["From the Division of Neurology (A.B.K.), Children\u2019s National Hospital, George Washington University Medical School, Washington DC; Division of Neurology (A.B.), Neurogenetics Translational Center of Excellence, University of Pennsylvania, Philadelphia; Kennedy Krieger Institute and The Johns Hopkins University School of Medicine (A.F.), Baltimore, MD; Division of Neurology (A.V., L.A.A.), Children\u2019s Hospital of Philadelphia, Perelman School of Medicine, University of Pennsylvania; Department of"],"raw_orcid":"https://orcid.org/0000-0002-2909-1722","affiliations":[{"raw_affiliation_string":"From the Division of Neurology (A.B.K.), Children\u2019s National Hospital, George Washington University Medical School, Washington DC; Division of Neurology (A.B.), Neurogenetics Translational Center of Excellence, University of Pennsylvania, Philadelphia; Kennedy Krieger Institute and The Johns Hopkins University School of Medicine (A.F.), Baltimore, MD; Division of Neurology (A.V., L.A.A.), Children\u2019s Hospital of Philadelphia, Perelman School of Medicine, University of Pennsylvania; Department of","institution_ids":["https://openalex.org/I1298154867","https://openalex.org/I1335321130","https://openalex.org/I1336742384","https://openalex.org/I145311948","https://openalex.org/I193531525","https://openalex.org/I2799853436","https://openalex.org/I79576946"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":7,"corresponding_author_ids":["https://openalex.org/A5039621445","https://openalex.org/A5061426453"],"corresponding_institution_ids":["https://openalex.org/I1298154867","https://openalex.org/I1335321130","https://openalex.org/I1336742384","https://openalex.org/I145311948","https://openalex.org/I193531525","https://openalex.org/I2799853436","https://openalex.org/I79576946"],"apc_list":{"value":3300,"currency":"USD","value_usd":3300},"apc_paid":{"value":3300,"currency":"USD","value_usd":3300},"fwci":0.6593,"has_fulltext":true,"cited_by_count":12,"citation_normalized_percentile":{"value":0.60126582,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":{"min":98,"max":99},"biblio":{"volume":"10","issue":"5","first_page":"e200192","last_page":"e200192"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T11027","display_name":"Metabolism and Genetic Disorders","score":0.5654000043869019,"subfield":{"id":"https://openalex.org/subfields/1308","display_name":"Clinical Biochemistry"},"field":{"id":"https://openalex.org/fields/13","display_name":"Biochemistry, Genetics and Molecular Biology"},"domain":{"id":"https://openalex.org/domains/1","display_name":"Life Sciences"}},"topics":[{"id":"https://openalex.org/T11027","display_name":"Metabolism and Genetic Disorders","score":0.5654000043869019,"subfield":{"id":"https://openalex.org/subfields/1308","display_name":"Clinical Biochemistry"},"field":{"id":"https://openalex.org/fields/13","display_name":"Biochemistry, Genetics and Molecular Biology"},"domain":{"id":"https://openalex.org/domains/1","display_name":"Life Sciences"}},{"id":"https://openalex.org/T10945","display_name":"Lysosomal Storage Disorders Research","score":0.3402999937534332,"subfield":{"id":"https://openalex.org/subfields/2737","display_name":"Physiology"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},{"id":"https://openalex.org/T12331","display_name":"Hereditary Neurological Disorders","score":0.032099999487400055,"subfield":{"id":"https://openalex.org/subfields/2804","display_name":"Cellular and Molecular Neuroscience"},"field":{"id":"https://openalex.org/fields/28","display_name":"Neuroscience"},"domain":{"id":"https://openalex.org/domains/1","display_name":"Life Sciences"}}],"keywords":[{"id":"https://openalex.org/keywords/x-linked-adrenoleukodystrophy","display_name":"X-linked adrenoleukodystrophy","score":1.0},{"id":"https://openalex.org/keywords/adrenomyeloneuropathy","display_name":"adrenomyeloneuropathy","score":0.9940000176429749},{"id":"https://openalex.org/keywords/adult-diagnosis","display_name":"adult diagnosis","score":0.6629999876022339},{"id":"https://openalex.org/keywords/cerebral-adrenoleukodystrophy","display_name":"cerebral adrenoleukodystrophy","score":0.968999981880188},{"id":"https://openalex.org/keywords/myeloneuropathy","display_name":"myeloneuropathy","score":0.8460000157356262},{"id":"https://openalex.org/keywords/spastic-paraplegia","display_name":"spastic paraplegia","score":0.796999990940094},{"id":"https://openalex.org/keywords/hematopoietic-stem-cell-transplantation","display_name":"hematopoietic stem cell transplantation","score":0.9039999842643738},{"id":"https://openalex.org/keywords/disease-modifying-therapy","display_name":"disease-modifying therapy","score":0.7950000166893005},{"id":"https://openalex.org/keywords/multidisciplinary-care","display_name":"multidisciplinary care","score":0.7590000033378601},{"id":"https://openalex.org/keywords/genetic-counseling","display_name":"genetic counseling","score":0.7609999775886536},{"id":"https://openalex.org/keywords/newborn-screening","display_name":"newborn screening","score":0.7559999823570251},{"id":"https://openalex.org/keywords/carrier-status","display_name":"carrier state","score":0.33500000834465027}],"concepts":[{"id":"https://openalex.org/C2777150068","wikidata":"https://www.wikidata.org/wiki/Q366964","display_name":"Adrenoleukodystrophy","level":4,"score":0.9043009281158447},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.562998354434967},{"id":"https://openalex.org/C99508421","wikidata":"https://www.wikidata.org/wiki/Q2678675","display_name":"Physical medicine and rehabilitation","level":1,"score":0.3669162392616272},{"id":"https://openalex.org/C126322002","wikidata":"https://www.wikidata.org/wiki/Q11180","display_name":"Internal medicine","level":1,"score":0.27668309211730957},{"id":"https://openalex.org/C170493617","wikidata":"https://www.wikidata.org/wiki/Q208467","display_name":"Receptor","level":2,"score":0.0},{"id":"https://openalex.org/C127078168","wikidata":"https://www.wikidata.org/wiki/Q138639","display_name":"Peroxisome","level":3,"score":0.0}],"mesh":[],"locations_count":4,"locations":[{"id":"doi:10.1212/nxg.0000000000200192","doi":"https://doi.org/10.1212/nxg.0000000000200192","is_oa":true,"landing_page_url":"https://doi.org/10.1212/nxg.0000000000200192","pdf_url":null,"source":{"id":"https://openalex.org/S2764805357","display_name":"Neurology Genetics","issn_l":"2376-7839","issn":["2376-7839"],"is_oa":true,"is_in_doaj":true,"is_core":true,"listed_in":["cwts-core","doaj","dongbi-b","doyens","jufo-1","ki-jl-1","norway-1","oarl","poland-100","russia-white-list-2","vabb-shw"],"host_organization":"https://openalex.org/P4310318547","host_organization_name":"Wolters Kluwer","host_organization_lineage":["https://openalex.org/P4310318547"],"host_organization_lineage_names":["Wolters Kluwer"],"type":"journal"},"license":"cc-by-nc-nd","license_id":"https://openalex.org/licenses/cc-by-nc-nd","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Neurology Genetics","raw_type":"journal-article"},{"id":"pmh:oai:pubmedcentral.nih.gov:11450743","doi":null,"is_oa":true,"landing_page_url":"https://www.ncbi.nlm.nih.gov/pmc/articles/11450743","pdf_url":"https://pmc.ncbi.nlm.nih.gov/articles/PMC11450743/pdf/NXG-2024-100143.pdf","source":{"id":"https://openalex.org/S2764455111","display_name":"PubMed Central","issn_l":null,"issn":null,"is_oa":true,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I1299303238","host_organization_name":"National Institutes of Health","host_organization_lineage":["https://openalex.org/I1299303238"],"host_organization_lineage_names":[],"type":"repository"},"license":"cc-by-nc-nd","license_id":"https://openalex.org/licenses/cc-by-nc-nd","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Neurol Genet","raw_type":"Text"},{"id":"pmid:39372123","doi":null,"is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/39372123","pdf_url":null,"source":{"id":"https://openalex.org/S4306525036","display_name":"PubMed","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I1299303238","host_organization_name":"National Institutes of Health","host_organization_lineage":["https://openalex.org/I1299303238"],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Neurology. Genetics","raw_type":"Journal Article"},{"id":"pmh:oai:pure.amsterdamumc.nl:openaire/efba4422-1680-49c1-9638-514e9a40f270","doi":null,"is_oa":true,"landing_page_url":"https://pure.amsterdamumc.nl/files/136560757/kornbluh-et-al-2024-practical-approach-to-longitudinal-neurologic-care-of-adults-with-x-linked-adrenoleukodystrophy-and.pdf","pdf_url":null,"source":{"id":"https://openalex.org/S7407055222","display_name":"Pure Amsterdam UMC","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":null,"host_organization_name":null,"host_organization_lineage":[],"host_organization_lineage_names":[],"type":"repository"},"license":"other-oa","license_id":"https://openalex.org/licenses/other-oa","version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"Kornbluh, A B, Baldwin, A, Fatemi, A, Vanderver, A, Adang, L A, van Haren, K, Sampson, J, Eichler, F S, Sadjadi, R, Engelen, M & Orthmann-Murphy, J L 2024, 'Practical Approach to Longitudinal Neurologic Care of Adults With X-Linked Adrenoleukodystrophy and Adrenomyeloneuropathy', Neurology: Genetics, vol. 10, no. 5, e200192. https://doi.org/10.1212/NXG.0000000000200192","raw_type":"info:eu-repo/semantics/review"}],"best_oa_location":{"id":"doi:10.1212/nxg.0000000000200192","doi":"https://doi.org/10.1212/nxg.0000000000200192","is_oa":true,"landing_page_url":"https://doi.org/10.1212/nxg.0000000000200192","pdf_url":null,"source":{"id":"https://openalex.org/S2764805357","display_name":"Neurology Genetics","issn_l":"2376-7839","issn":["2376-7839"],"is_oa":true,"is_in_doaj":true,"is_core":true,"listed_in":["cwts-core","doaj","dongbi-b","doyens","jufo-1","ki-jl-1","norway-1","oarl","poland-100","russia-white-list-2","vabb-shw"],"host_organization":"https://openalex.org/P4310318547","host_organization_name":"Wolters Kluwer","host_organization_lineage":["https://openalex.org/P4310318547"],"host_organization_lineage_names":["Wolters Kluwer"],"type":"journal"},"license":"cc-by-nc-nd","license_id":"https://openalex.org/licenses/cc-by-nc-nd","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Neurology Genetics","raw_type":"journal-article"},"sustainable_development_goals":[{"id":"https://metadata.un.org/sdg/3","display_name":"Good health and well-being","score":1.0}],"study_designs":[],"awards":[],"funders":[],"has_content":{"grobid_xml":false,"pdf":false},"content_urls":null,"referenced_works_count":59,"referenced_works":["https://openalex.org/W118455131","https://openalex.org/W1578634963","https://openalex.org/W1845248138","https://openalex.org/W1861727817","https://openalex.org/W1973343526","https://openalex.org/W1988581445","https://openalex.org/W1990589349","https://openalex.org/W2008239986","https://openalex.org/W2014128251","https://openalex.org/W2016468405","https://openalex.org/W2019659700","https://openalex.org/W2026764365","https://openalex.org/W2035260979","https://openalex.org/W2043201495","https://openalex.org/W2047834937","https://openalex.org/W2070319238","https://openalex.org/W2073937441","https://openalex.org/W2076153637","https://openalex.org/W2081051956","https://openalex.org/W2089056174","https://openalex.org/W2099508046","https://openalex.org/W2100485002","https://openalex.org/W2106485907","https://openalex.org/W2107272819","https://openalex.org/W2107363872","https://openalex.org/W2107696332","https://openalex.org/W2107786477","https://openalex.org/W2110981477","https://openalex.org/W2113182790","https://openalex.org/W2148277974","https://openalex.org/W2150643970","https://openalex.org/W2151567647","https://openalex.org/W2164317244","https://openalex.org/W2169719410","https://openalex.org/W2335886660","https://openalex.org/W2599975163","https://openalex.org/W2606781181","https://openalex.org/W2755519976","https://openalex.org/W2764213443","https://openalex.org/W2769051247","https://openalex.org/W2893932486","https://openalex.org/W2898100827","https://openalex.org/W2904939747","https://openalex.org/W2916744594","https://openalex.org/W2947586542","https://openalex.org/W2999213758","https://openalex.org/W3043111269","https://openalex.org/W3120162919","https://openalex.org/W3165292144","https://openalex.org/W3166299108","https://openalex.org/W3193693450","https://openalex.org/W3216111363","https://openalex.org/W4206448713","https://openalex.org/W4213259930","https://openalex.org/W4297989795","https://openalex.org/W4317488869","https://openalex.org/W4367304437","https://openalex.org/W4385543657","https://openalex.org/W6639050380"],"related_works":["https://openalex.org/W4389404687","https://openalex.org/W7220642828","https://openalex.org/W4205327559","https://openalex.org/W7160225953","https://openalex.org/W2032024366","https://openalex.org/W3206702440","https://openalex.org/W4282929030","https://openalex.org/W2089560150","https://openalex.org/W1988581445","https://openalex.org/W1540835210"],"abstract_inverted_index":{"Although":[0],"X-linked":[1],"adrenoleukodystrophy":[2],"(ALD)":[3],"has":[4],"historically":[5],"been":[6],"considered":[7,200],"a":[8,55,84,151,271],"childhood":[9],"disease":[10],"managed":[11],"by":[12,41,278],"pediatric":[13],"neurologists,":[14],"it":[15],"is":[16,66,93],"one":[17],"of":[18,50,58,70,86,129,131,134,139,161,222,233,263,301],"the":[19,132,143,209,279],"most":[20],"common":[21],"leukodystrophies":[22],"diagnosed":[23,82],"in":[24,28,54,67,83,148,165],"adulthood.":[25],"An":[26],"increase":[27],"both":[29],"male":[30],"and":[31,46,73,115,140,159,175,196,214,246,290,297,306],"female":[32],"adults":[33],"reaching":[34],"diagnosis":[35,107,144],"due":[36],"to":[37,171,208,254,274,294],"familial":[38],"cases":[39],"identified":[40,94],"state":[42],"newborn":[43,99],"screening":[44],"panels":[45],"more":[47],"widespread":[48],"use":[49],"genetic":[51,96,152],"testing":[52,97],"results":[53],"large":[56],"cohort":[57],"presymptomatic":[59],"or":[60,98,105,187,266],"early":[61,252],"symptomatic":[62,103],"adults.":[63],"This":[64,281],"population":[65],"urgent":[68],"need":[69],"standardized":[71],"assessments":[72],"follow-up":[74],"care.":[75],"Adults":[76],"with":[77,108,121,150,179,230,260],"ALD/adrenomyeloneuropathy":[78],"(AMN)":[79],"may":[80],"be":[81,146,168,206],"variety":[85],"ways,":[87],"including":[88,127],"after":[89],"another":[90],"family":[91],"member":[92],"via":[95],"screening,":[100],"presenting":[101],"for":[102,156,194,218,228,240,286,299,304],"evaluation,":[104],"following":[106],"primary":[109],"adrenal":[110,157,188],"insufficiency.":[111],"Significant":[112],"provider,":[113],"patient,":[114],"systems-based":[116],"barriers":[117],"prevent":[118],"adult":[119],"patients":[120,204,229,259],"ALD/AMN":[122],"from":[123,270],"receiving":[124],"appropriate":[125,302],"care,":[126],"lack":[128],"awareness":[130],"importance":[133],"longitudinal":[135,275],"neurologic":[136,223],"management.":[137],"Confirmation":[138],"education":[141],"about":[142],"should":[145,167,205],"coordinated":[147],"conjunction":[149],"counselor.":[153],"Routine":[154],"surveillance":[155],"insufficiency":[158],"onset":[160],"cerebral":[162,185],"ALD":[163,180],"(CALD)":[164],"men":[166],"performed":[169],"systematically":[170],"avoid":[172],"preventable":[173],"morbidity":[174],"mortality.":[176],"While":[177],"women":[178],"do":[181],"not":[182],"usually":[183],"develop":[184],"demyelination":[186],"insufficiency,":[189],"they":[190],"remain":[191],"at":[192],"risk":[193],"myeloneuropathy":[195],"are":[197],"no":[198],"longer":[199],"\"carriers.\"":[201],"After":[202],"diagnosis,":[203],"connected":[207],"robust":[210],"support":[211],"networks,":[212],"foundations,":[213],"research":[215],"organizations":[216],"available":[217],"ALD/AMN.":[219],"Core":[220],"principles":[221],"symptom":[224,267,295],"management":[225],"parallel":[226],"those":[227],"other":[231,247],"etiologies":[232],"progressive":[234],"spastic":[235],"paraplegia.":[236],"Appropriate":[237],"patient":[238],"candidates":[239,303],"hematopoietic":[241],"stem":[242],"cell":[243],"transplant":[244],"(HSCT)":[245],"investigational":[248,307],"disease-modifying":[249],"strategies":[250,285],"require":[251],"identification":[253,300],"achieve":[255],"optimal":[256],"outcomes.":[257],"All":[258],"ALD/AMN,":[261],"regardless":[262],"sex,":[264],"age,":[265],"severity,":[268],"benefit":[269],"multidisciplinary":[272],"approach":[273,293],"care":[276],"spearheaded":[277],"neurologist.":[280],"review":[282],"proposes":[283],"key":[284],"diagnostic":[287],"confirmation,":[288],"laboratory":[289],"imaging":[291],"surveillance,":[292],"management,":[296],"guidance":[298],"HSCT":[305],"treatments.":[308]},"counts_by_year":[{"year":2026,"cited_by_count":7},{"year":2025,"cited_by_count":5}],"updated_date":"2026-10-29T09:56:32.521200","created_date":"2024-10-04T00:00:00"}
