{"id":"https://openalex.org/W2977326678","doi":"https://doi.org/10.14309/00000434-201510001-01765","title":"Design and Details of a Prospective Global Short Bowel Syndrome Patient Population Registry","display_name":"Design and Details of a Prospective Global Short Bowel Syndrome Patient Population Registry","publication_year":2015,"publication_date":"2015-10-01","ids":{"openalex":"https://openalex.org/W2977326678","doi":"https://doi.org/10.14309/00000434-201510001-01765","mag":"2977326678"},"language":"en","primary_location":{"id":"doi:10.14309/00000434-201510001-01765","doi":"https://doi.org/10.14309/00000434-201510001-01765","is_oa":false,"landing_page_url":"https://doi.org/10.14309/00000434-201510001-01765","pdf_url":null,"source":{"id":"https://openalex.org/S66441642","display_name":"The American Journal of Gastroenterology","issn_l":"0002-9270","issn":["0002-9270","1572-0241"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["anvur-scientific","cwts-core","dongbi-b","doyens","jufo-2","ki-jl-2","medline","norway-2","poland-200","russia-white-list-1","vabb-shw"],"host_organization":"https://openalex.org/P4310315671","host_organization_name":"Lippincott Williams & Wilkins","host_organization_lineage":["https://openalex.org/P4310315671","https://openalex.org/P4310318547"],"host_organization_lineage_names":["Lippincott Williams & Wilkins","Wolters Kluwer"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"American Journal of Gastroenterology","raw_type":"journal-article"},"volume":null,"type":"article","is_traditional":true,"indexed_in":["crossref"],"open_access":{"is_oa":false,"oa_status":"closed","oa_url":null,"any_repository_has_fulltext":false},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5111581887","display_name":"Steven J. Bowlin","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Steven J. Bowlin","raw_affiliation_strings":["NPS Pharmaceuticals, Inc., Bedminster, NJ"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"NPS Pharmaceuticals, Inc., Bedminster, NJ","institution_ids":[]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5108510323","display_name":"Nader N. Youssef","orcid":"https://orcid.org/0009-0007-9537-6711","observed_orcids":["https://orcid.org/0009-0007-9537-6711"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Nader N. Youssef","raw_affiliation_strings":["NPS Pharmaceuticals, Inc., Bedminster, NJ"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"NPS Pharmaceuticals, Inc., Bedminster, NJ","institution_ids":[]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5100779047","display_name":"Eric H. Kim","orcid":"https://orcid.org/0000-0002-0284-8342","observed_orcids":["https://orcid.org/0000-0002-0284-8342"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Eric H. Kim","raw_affiliation_strings":["NPS Pharmaceuticals, Inc., Bedminster, NJ"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"NPS Pharmaceuticals, Inc., Bedminster, NJ","institution_ids":[]}]}],"institutions":[],"countries_distinct_count":0,"institutions_distinct_count":0,"corresponding_author_ids":[],"corresponding_institution_ids":[],"apc_list":{"value":4390,"currency":"USD","value_usd":4390},"apc_paid":null,"fwci":0.2969,"has_fulltext":false,"cited_by_count":1,"citation_normalized_percentile":{"value":0.68101936,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":{"min":89,"max":94},"biblio":{"volume":"110","issue":null,"first_page":"S750","last_page":"S750"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T10858","display_name":"Clinical Nutrition and Gastroenterology","score":0.9984999895095825,"subfield":{"id":"https://openalex.org/subfields/2916","display_name":"Nutrition and Dietetics"},"field":{"id":"https://openalex.org/fields/29","display_name":"Nursing"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},"topics":[{"id":"https://openalex.org/T10858","display_name":"Clinical Nutrition and Gastroenterology","score":0.9984999895095825,"subfield":{"id":"https://openalex.org/subfields/2916","display_name":"Nutrition and Dietetics"},"field":{"id":"https://openalex.org/fields/29","display_name":"Nursing"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},{"id":"https://openalex.org/T10134","display_name":"Inflammatory Bowel Disease","score":0.0003000000142492354,"subfield":{"id":"https://openalex.org/subfields/2715","display_name":"Gastroenterology"},"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/T12020","display_name":"Enhanced Recovery After Surgery","score":9.999999747378752e-05,"subfield":{"id":"https://openalex.org/subfields/2746","display_name":"Surgery"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}}],"keywords":[{"id":"https://openalex.org/keywords/short-bowel-syndrome","display_name":"short bowel syndrome","score":1.0},{"id":"https://openalex.org/keywords/patient-registry","display_name":"patient registry","score":0.6990000009536743},{"id":"https://openalex.org/keywords/teduglutide","display_name":"teduglutide","score":0.9990000128746033},{"id":"https://openalex.org/keywords/colorectal-cancer-incidence","display_name":"colorectal cancer incidence","score":0.8479999899864197},{"id":"https://openalex.org/keywords/long-term-drug-safety","display_name":"long-term drug safety","score":0.8730000257492065},{"id":"https://openalex.org/keywords/natural-disease-progression","display_name":"natural disease progression","score":0.5690000057220459},{"id":"https://openalex.org/keywords/fluid-overload","display_name":"fluid overload","score":0.9079999923706055},{"id":"https://openalex.org/keywords/intestinal-absorption","display_name":"intestinal absorption","score":0.5019999742507935},{"id":"https://openalex.org/keywords/rare-diseases","display_name":"rare diseases","score":0.3720000088214874}],"concepts":[{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.9454522132873535},{"id":"https://openalex.org/C2779820108","wikidata":"https://www.wikidata.org/wiki/Q662272","display_name":"Short bowel syndrome","level":3,"score":0.6612086296081543},{"id":"https://openalex.org/C61511704","wikidata":"https://www.wikidata.org/wiki/Q1671857","display_name":"Incidence (geometry)","level":2,"score":0.6430644989013672},{"id":"https://openalex.org/C2908647359","wikidata":"https://www.wikidata.org/wiki/Q2625603","display_name":"Population","level":2,"score":0.6274374723434448},{"id":"https://openalex.org/C23131810","wikidata":"https://www.wikidata.org/wiki/Q818574","display_name":"Observational study","level":2,"score":0.5783186554908752},{"id":"https://openalex.org/C107130276","wikidata":"https://www.wikidata.org/wiki/Q133805","display_name":"Epidemiology","level":2,"score":0.5394108891487122},{"id":"https://openalex.org/C126322002","wikidata":"https://www.wikidata.org/wiki/Q11180","display_name":"Internal medicine","level":1,"score":0.4568342864513397},{"id":"https://openalex.org/C187212893","wikidata":"https://www.wikidata.org/wiki/Q123028","display_name":"Pediatrics","level":1,"score":0.3919522166252136},{"id":"https://openalex.org/C78722104","wikidata":"https://www.wikidata.org/wiki/Q21653202","display_name":"Parenteral nutrition","level":2,"score":0.10645776987075806},{"id":"https://openalex.org/C99454951","wikidata":"https://www.wikidata.org/wiki/Q932068","display_name":"Environmental health","level":1,"score":0.08297055959701538},{"id":"https://openalex.org/C120665830","wikidata":"https://www.wikidata.org/wiki/Q14620","display_name":"Optics","level":1,"score":0.0},{"id":"https://openalex.org/C121332964","wikidata":"https://www.wikidata.org/wiki/Q413","display_name":"Physics","level":0,"score":0.0}],"mesh":[],"locations_count":1,"locations":[{"id":"doi:10.14309/00000434-201510001-01765","doi":"https://doi.org/10.14309/00000434-201510001-01765","is_oa":false,"landing_page_url":"https://doi.org/10.14309/00000434-201510001-01765","pdf_url":null,"source":{"id":"https://openalex.org/S66441642","display_name":"The American Journal of Gastroenterology","issn_l":"0002-9270","issn":["0002-9270","1572-0241"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["anvur-scientific","cwts-core","dongbi-b","doyens","jufo-2","ki-jl-2","medline","norway-2","poland-200","russia-white-list-1","vabb-shw"],"host_organization":"https://openalex.org/P4310315671","host_organization_name":"Lippincott Williams & Wilkins","host_organization_lineage":["https://openalex.org/P4310315671","https://openalex.org/P4310318547"],"host_organization_lineage_names":["Lippincott Williams & Wilkins","Wolters Kluwer"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"American Journal of Gastroenterology","raw_type":"journal-article"}],"best_oa_location":null,"sustainable_development_goals":[{"score":1.0,"id":"https://metadata.un.org/sdg/3","display_name":"Good health and well-being"}],"study_designs":[],"awards":[],"funders":[],"has_content":{"pdf":false,"grobid_xml":false},"content_urls":null,"referenced_works_count":0,"referenced_works":[],"related_works":["https://openalex.org/W4413896920","https://openalex.org/W4401212994","https://openalex.org/W4382050405","https://openalex.org/W4413896936","https://openalex.org/W4389343391","https://openalex.org/W4417248430","https://openalex.org/W4353034321","https://openalex.org/W2921081689","https://openalex.org/W3208304469","https://openalex.org/W4402625628"],"abstract_inverted_index":{"Introduction:":[0],"The":[1,184,247],"clinical":[2,26,73,90,161,354,366],"presentation,":[3],"treatment":[4,335],"needs,":[5],"and":[6,42,75,89,135,174,228,266,290,302,328,337,356],"disease":[7,56,358],"progression":[8,359],"of":[9,48,58,98,113,118,128,209,249,286,288,292,309,313,352],"short":[10],"bowel":[11],"syndrome":[12],"(SBS)":[13],"vary":[14],"among":[15],"patients":[16],"(pts).":[17],"Although":[18],"the":[19,24,59,64,207,215,218,223,257,273,284,299,303],"teduglutide":[20,77,202,268,289],"development":[21],"program":[22],"provided":[23],"largest":[25],"data":[27,92,129,241,320,348],"set":[28,127],"for":[29,153,245,305],"SBS":[30,60,195,334,341,363],"to":[31,66,159,283,345],"date":[32],"(173":[33],"pts":[34,97,120,154,180,193,233,263,326,361],"were":[35],"exposed":[36],"during":[37],"2":[38],"phase":[39],"III":[40],"studies":[41],"their":[43],"long-term":[44,76,87,350],"extensions),":[45],"further":[46],"study":[47],"this":[49,82],"rare":[50],"condition":[51],"is":[52,166,188,343,370],"warranted.":[53],"A":[54,125],"global":[55],"registry":[57,342],"pt":[61,71],"population":[62,220],"has":[63],"potential":[65,304],"provide":[67,346],"greater":[68],"insight":[69],"into":[70],"characteristics,":[72],"outcomes,":[74,355],"safety":[78,88,186,276,351],"profile.":[79],"Methods:":[80],"In":[81],"prospective,":[83],"observational,":[84],"multinational":[85],"registry,":[86],"outcomes":[91,277],"will":[93,104,130,150,211,242,251,259,321],"be":[94,105,131,151,212,243,252,260,323],"collected":[95,132],"from":[96,222,234],"any":[99,197],"age":[100],"with":[101,110,123,177,194,196,201,214,265,315,331,362],"SBS.":[102],"Pts":[103],"recruited":[106],"over":[107],"5":[108],"years":[109,112],"\u226510":[111],"follow-up":[114],"per":[115],"pt,":[116],"regardless":[117],"whether":[119],"are":[121,181],"treated":[122,173,176,200,264,327,330],"teduglutide.":[124,316],"select":[126],"at":[133,144],"baseline":[134],"re-collected,":[136],"as":[137],"available,":[138],"on":[139],"an":[140],"ongoing":[141],"basis":[142],"(solicited":[143],"least":[145],"twice":[146],"annually).":[147],"Treatment":[148],"regimens":[149],"determined":[152],"by":[155,254,372],"treating":[156],"physicians":[157],"according":[158],"usual":[160],"practice.":[162,367],"Results:":[163],"Target":[164],"enrollment":[165],"1310":[167],"pts,":[168,206],"equally":[169],"split":[170],"between":[171,262],"those":[172,270],"not":[175,329],"teduglutide;":[178],"64":[179],"currently":[182],"enrolled.":[183],"primary":[185],"outcome":[187],"colorectal":[189],"cancer":[190],"(CRC)":[191],"in":[192,217,269,272,298,325,360,364],"remnant":[198],"colon":[199],"(Table).":[203],"For":[204,232],"US":[205,219],"incidence":[208,248,258],"CRC":[210,250],"compared":[213,253,261],"rate":[216],"obtained":[221],"most":[224],"recent":[225],"Surveillance,":[226],"Epidemiology,":[227],"End":[229],"Results":[230],"program.":[231],"other":[235,279],"regions,":[236],"World":[237],"Health":[238],"Organization":[239],"GLOBOCAN":[240],"used":[244],"comparison.":[246],"region.":[255],"Also,":[256],"without":[267],"enrolled":[271],"registry.":[274],"Secondary":[275],"include":[278],"adverse":[280],"events":[281],"related":[282],"mechanism":[285],"action":[287],"results":[291],"nonclinical":[293],"studies,":[294],"including":[295,333],"hyperplastic":[296],"changes":[297],"gastrointestinal":[300],"tract":[301],"fluid":[306],"overload":[307],"because":[308],"increased":[310],"intestinal":[311],"absorption":[312],"fluids":[314],"Other":[317],"clinically":[318],"meaningful":[319],"also":[322],"evaluated":[324],"teduglutide,":[332,353],"history":[336],"comorbidities.":[338],"Conclusion:":[339],"This":[340,368],"expected":[344],"valuable":[347],"regarding":[349],"natural":[357],"routine":[365],"research":[369],"funded":[371],"NPS":[373],"Pharmaceuticals,":[374],"Inc.,":[375],"Bedminster,":[376],"NJ.Figure":[377],"1":[378]},"counts_by_year":[{"year":2017,"cited_by_count":1}],"updated_date":"2026-09-29T14:09:16.559479","created_date":"2019-10-10T00:00:00"}