title: Presentation of a nationwide multicenter registry of intestinal failure and intestinal transplantation.
abstract: OBJECTIVE
  Exact data on Dutch patients with chronic intestinal failure (CIF) and after intestinal transplantation (ITx) have been lacking. To improve standard care of these patients, a nationwide collaboration has been established. Objectives of this study were obtaining an up-to-date prevalence of CIF and characterizing these patients using the specially developed multicenter web-based Dutch Registry of Intestinal Failure and Intestinal Transplantation (DRIFT).
  
  
  METHODS
  Cross-sectional study. CIF was defined as type 3 intestinal failure in which >75% of nutritional requirements were given as home parenteral nutrition (HPN) for ≥ 4 weeks in children and >50% for ≥3 months in adults. All patients with CIF receiving HPN care by the three Dutch specialized centers on January 1, 2013 and all ITx patients were registered in DRIFT (https://drift.darmfalen.nl).
  
  
  RESULTS
  In total, 195 patients with CIF (158 adults, 37 children) were identified, of whom 184 were registered in DRIFT. The Dutch point prevalence of CIF was 11.62 per million (12.24 for adults, 9.56 for children) on January 1, 2013. Fifty-seven patients (31%) had one or more indications for ITx, while 12 patients actually underwent ITx since its Dutch introduction. Four patients required transplantectomy of their intestinal graft and 3 intestinal transplant patients died.
  
  
  CONCLUSIONS
  The multicenter registry DRIFT revealed an up-to-date prevalence of CIF and provided nationwide insight into the patients with CIF during HPN and after ITx in the Netherlands. DRIFT will facilitate the multicenter monitoring of individual patients, thereby supporting multidisciplinary care and decision-making.
authors: Department of Pediatric Gastroenterology, University Medical Center Groningen, Beatrix Children's Hospital, Post Office Box 30.001, 9700 RB, Groningen, The Netherlands; Department of Pediatric Gastroenterology, Erasmus Medical Center-Sophia Children's Hospital, Post Office Box 2060, 3000 CB, Rotterdam, The Netherlands. Electronic address: e.neelis@erasmusmc.nl.
authors: E G
authors: EG
authors: Neelis
authors: Department of Gastroenterology and Hepatology, University Medical Center Groningen, Post Office Box 30.001, 9700 RB, Groningen, The Netherlands. Electronic address: a.m.roskott@umcg.nl.
authors: A M
authors: AM
authors: Roskott
authors: Department of Gastroenterology and Hepatology, University Medical Center Groningen, Post Office Box 30.001, 9700 RB, Groningen, The Netherlands. Electronic address: gerard.dijkstra@umcg.nl.
authors: G
authors: G
authors: Dijkstra
authors: Department of Gastroenterology and Hepatology, Radboud University Medical Center, Post Office Box 9101, 6500 HB, Nijmegen, The Netherlands. Electronic address: geert.wanten@radboudumc.nl.
authors: G J
authors: GJ
authors: Wanten
authors: Department of Endocrinology and Metabolism, Academic Medical Center, Post Office Box 22660, 1100 DD, Amsterdam, The Netherlands. Electronic address: m.j.serlie@amc.uva.nl.
authors: M J
authors: MJ
authors: Serlie
authors: Department of Pediatric Gastroenterology, Academic Medical Center, Emma Children's Hospital, Post Office Box 22660, 1100 DD, Amsterdam, The Netherlands. Electronic address: m.m.tabbers@amc.uva.nl.
authors: M M
authors: MM
authors: Tabbers
authors: Department of Pediatric Gastroenterology, Radboud University Medical Center, Post Office Box 9101, 6500 HB, Nijmegen, The Netherlands. Electronic address: gerard.damen@radboudumc.nl.
authors: G
authors: G
authors: Damen
authors: Department of Gastroenterology and Hepatology, Radboud University Medical Center, Post Office Box 9101, 6500 HB, Nijmegen, The Netherlands. Electronic address: evelyn.olthof@radboudumc.nl.
authors: E D
authors: ED
authors: Olthof
authors: Nutrition Support Team, Academic Medical Center, Post Office Box 22660, 1100 DD, Amsterdam, The Netherlands. Electronic address: c.f.jonkers@amc.uva.nl.
authors: C F
authors: CF
authors: Jonkers
authors: Department of Gastroenterology and Hepatology, University Medical Center Groningen, Post Office Box 30.001, 9700 RB, Groningen, The Netherlands. Electronic address: j.h.kloeze@student.rug.nl.
authors: J H
authors: JH
authors: Kloeze
authors: Nuffield Department of Surgical Sciences, University of Oxford, OX37DQ, Oxford, United Kingdom. Electronic address: rutger.ploeg@nds.ox.ac.uk.
authors: R J
authors: RJ
authors: Ploeg
authors: Healthcare IT Developer, Aceso BV, De Deimten 11, 9747 AV, Groningen, The Netherlands. Electronic address: floris@aceso.nl.
authors: F
authors: F
authors: Imhann
authors: Department of Surgery, Isala Clinics, Post Office Box 10400, 8000 GK, Zwolle, The Netherlands. Electronic address: v.b.nieuwenhuijs@isala.nl.
authors: V B
authors: VB
authors: Nieuwenhuijs
authors: Department of Pediatric Gastroenterology, Erasmus Medical Center-Sophia Children's Hospital, Post Office Box 2060, 3000 CB, Rotterdam, The Netherlands; Department of Pediatrics, Leiden University Medical Center, Willem Alexander Children's Hospital, Post Office Box 9600, 2300 RC, Leiden, The Netherlands. Electronic address: e.rings@erasmusmc.nl.
authors: E H H M
authors: EHHM
authors: Rings
mesh_terms: D000328:Adult; D002648:Child; D002908:Chronic Disease; D003430:Cross-Sectional Studies; D005260:Female; D006801:Humans; D020407:Internet; D007410:Intestinal Diseases / Q000453:epidemiology* / Q000601:surgery; D007422:Intestines / Q000503:physiopathology / Q000637:transplantation*; D008297:Male; D009426:Netherlands / Q000453:epidemiology; D009751:Nutritional Requirements; D016377:Organ Transplantation; D016331:Parenteral Nutrition, Home; D011183:Postoperative Complications / Q000628:therapy; D015995:Prevalence; D012042:Registries
keywords: Home parenteral nutrition; Intestinal failure; Intestinal transplantation