title: Dutch Chronic Pancreatitis Registry (CARE): design and rationale of a nationwide prospective evaluation and follow-up.
abstract: BACKGROUND
  Chronic pancreatitis is a complex disease with many unanswered questions regarding the natural history and therapy. Prospective longitudinal studies with long-term follow-up are warranted.
  
  
  METHODS
  The Dutch Chronic Pancreatitis Registry (CARE) is a nationwide registry aimed at prospective evaluation and follow-up of patients with chronic pancreatitis. All patients with (suspected) chronic or recurrent pancreatitis are eligible for CARE. Patients are followed-up by yearly questionnaires and review of medical records. Study outcomes are pain, disease complications, quality of life, and pancreatic function. The target sample size was set at 500 for the first year and 1000 patients within 3 years.
  
  
  RESULTS
  A total of 1218 patients were included from February 2010 until June 2013 by 76 participating surgeons and gastroenterologist from 33 hospitals. Participation rate was 90% of eligible patients. Eight academic centers included 761 (62%) patients, while 25 community hospitals included 457 (38%). Patient centered outcomes were assessed by yearly questionnaires, which had a response rate of 85 and 82% for year 1 and 2, respectively. The median age of patients was 58 years, 814 (67%) were male, and 38% had symptoms for less than 5 years.
  
  
  CONCLUSIONS
  The CARE registry has successfully recruited over 1200 patients with chronic and recurrent pancreatitis in about 3 years. The defined inclusion criteria ensure patients are included at an early disease stage. Participation and compliance rates are high. CARE offers a unique opportunity with sufficient power to investigate many clinical questions regarding natural course, complications, and efficacy and timing of treatment strategies.
authors.affiliation: Department of Surgery, Academic Medical Center Amsterdam, Amsterdam, Netherlands; Department of Surgery, University Medical Center Utrecht, Utrecht, Netherlands. Electronic address: u.ahmedali@pancreatitis.nl.
authors.forename: U
authors.initials: U
authors.lastname: Ahmed Ali
authors.affiliation: Department of Surgery, Academic Medical Center Amsterdam, Amsterdam, Netherlands.
authors.forename: Y
authors.initials: Y
authors.lastname: Issa
authors.affiliation: Department of Surgery, RadboudUMC, Nijmegen, Netherlands.
authors.forename: H
authors.initials: H
authors.lastname: van Goor
authors.affiliation: Department of Surgery, Erasmus Medical Center, Rotterdam, Netherlands.
authors.forename: C H
authors.initials: CH
authors.lastname: van Eijck
authors.affiliation: Department of Surgery, Isala Clinics, Zwolle, Netherlands.
authors.forename: V B
authors.initials: VB
authors.lastname: Nieuwenhuijs
authors.affiliation: Department of Gastroenterology, Maastricht University Medical Center, Maastricht, Netherlands.
authors.forename: Y
authors.initials: Y
authors.lastname: Keulemans
authors.affiliation: Department of Gastroenterology, Academic Medical Center Amsterdam, Amsterdam, Netherlands.
authors.forename: P
authors.initials: P
authors.lastname: Fockens
authors.affiliation: Department of Surgery, Academic Medical Center Amsterdam, Amsterdam, Netherlands.
authors.forename: O R
authors.initials: OR
authors.lastname: Busch
authors.affiliation: Department of Gastroenterology, RadboudUMC, Nijmegen, Netherlands.
authors.forename: J P
authors.initials: JP
authors.lastname: Drenth
authors.affiliation: Department of Surgery, Maastricht University Medical Center, Maastricht, Netherlands.
authors.forename: C H
authors.initials: CH
authors.lastname: Dejong
authors.affiliation: Department of Gastroenterology, University Medical Center Groningen, Groningen, Netherlands.
authors.forename: H M
authors.initials: HM
authors.lastname: van Dullemen
authors.affiliation: Department of Gastroenterology, Academic Medical Center Amsterdam, Amsterdam, Netherlands.
authors.forename: J E
authors.initials: JE
authors.lastname: van Hooft
authors.affiliation: Department of Gastroenterology, University Medical Center Utrecht, Utrecht, Netherlands.
authors.forename: P D
authors.initials: PD
authors.lastname: Siersema
authors.affiliation: Department of Gastroenterology, Rijnstate Hospital, Arnhem, Netherlands.
authors.forename: B W M
authors.initials: BW
authors.lastname: Spanier
authors.affiliation: Department of Gastroenterology, Erasmus Medical Center, Rotterdam, Netherlands.
authors.forename: J W
authors.initials: JW
authors.lastname: Poley
authors.affiliation: Department of Gastroenterology, Isala Clinics, Zwolle, Netherlands.
authors.forename: A C
authors.initials: AC
authors.lastname: Poen
authors.affiliation: Department of Gastroenterology, St. Antonius Hospital, Nieuwegein, Netherlands.
authors.forename: R
authors.initials: R
authors.lastname: Timmer
authors.affiliation: Department of Gastroenterology, Amphia Hospital, Breda, Netherlands.
authors.forename: T
authors.initials: T
authors.lastname: Seerden
authors.affiliation: Department of Gastroenterology, Canisius-Wilhelmina Hospital, Nijmegen, Netherlands.
authors.forename: A C
authors.initials: AC
authors.lastname: Tan
authors.affiliation: Department of Gastroenterology, Martini Hospital, Groningen, Netherlands.
authors.forename: W J
authors.initials: WJ
authors.lastname: Thijs
authors.affiliation: Department of Gastroenterology, Gelderse Vallei Hospital, Ede, Netherlands.
authors.forename: B J M
authors.initials: BJ
authors.lastname: Witteman
authors.affiliation: Department of Gastroenterology, Jeroen Bosch Hospital, 's-Hertogenbosch, Netherlands.
authors.forename: T E H
authors.initials: TE
authors.lastname: Romkens
authors.affiliation: Department of Surgery, Academic Medical Center Amsterdam, Amsterdam, Netherlands.
authors.forename: A J
authors.initials: AJ
authors.lastname: Roeterdink
authors.affiliation: Department of OR and Evidence Based Surgery, RadboudUMC, Nijmegen, Netherlands.
authors.forename: H G
authors.initials: HG
authors.lastname: Gooszen
authors.affiliation: Department of Surgery, Academic Medical Center Amsterdam, Amsterdam, Netherlands.
authors.forename: H C
authors.initials: HC
authors.lastname: van Santvoort
authors.affiliation: Department of Gastroenterology, Erasmus Medical Center, Rotterdam, Netherlands.
authors.forename: M J
authors.initials: MJ
authors.lastname: Bruno
authors.affiliation: Department of Surgery, Academic Medical Center Amsterdam, Amsterdam, Netherlands.
authors.forename: M A
authors.initials: MA
authors.lastname: Boermeester
mesh_terms: D000328:Adult; D000368:Aged; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D008297:Male; D008875:Middle Aged; D009426:Netherlands; D017063:Outcome Assessment, Health Care; D010147:Pain Measurement; D050500:Pancreatitis, Chronic / Q000150:complications / Q000175:diagnosis / Q000628:therapy; D011446:Prospective Studies; D011788:Quality of Life; D012042:Registries; D011795:Surveys and Questionnaires
keywords: Chronic pancreatitis; Cohort study; Disease outcome; Longitudinal research; Pancreas; Quality of life