U Ahmed Ali1, Y Issa2, H van Goor3, C H van Eijck4, V B Nieuwenhuijs5, Y Keulemans6, P Fockens7, O R Busch2, J P Drenth8, C H Dejong9, H M van Dullemen10, J E van Hooft7, P D Siersema11, B W M Spanier12, J W Poley13, A C Poen14, R Timmer15, T Seerden16, A C Tan17, W J Thijs18, B J M Witteman19, T E H Romkens20, A J Roeterdink2, H G Gooszen21, H C van Santvoort2, M J Bruno13, M A Boermeester2. 1. Department of Surgery, Academic Medical Center Amsterdam, Amsterdam, Netherlands; Department of Surgery, University Medical Center Utrecht, Utrecht, Netherlands. Electronic address: u.ahmedali@pancreatitis.nl. 2. Department of Surgery, Academic Medical Center Amsterdam, Amsterdam, Netherlands. 3. Department of Surgery, RadboudUMC, Nijmegen, Netherlands. 4. Department of Surgery, Erasmus Medical Center, Rotterdam, Netherlands. 5. Department of Surgery, Isala Clinics, Zwolle, Netherlands. 6. Department of Gastroenterology, Maastricht University Medical Center, Maastricht, Netherlands. 7. Department of Gastroenterology, Academic Medical Center Amsterdam, Amsterdam, Netherlands. 8. Department of Gastroenterology, RadboudUMC, Nijmegen, Netherlands. 9. Department of Surgery, Maastricht University Medical Center, Maastricht, Netherlands. 10. Department of Gastroenterology, University Medical Center Groningen, Groningen, Netherlands. 11. Department of Gastroenterology, University Medical Center Utrecht, Utrecht, Netherlands. 12. Department of Gastroenterology, Rijnstate Hospital, Arnhem, Netherlands. 13. Department of Gastroenterology, Erasmus Medical Center, Rotterdam, Netherlands. 14. Department of Gastroenterology, Isala Clinics, Zwolle, Netherlands. 15. Department of Gastroenterology, St. Antonius Hospital, Nieuwegein, Netherlands. 16. Department of Gastroenterology, Amphia Hospital, Breda, Netherlands. 17. Department of Gastroenterology, Canisius-Wilhelmina Hospital, Nijmegen, Netherlands. 18. Department of Gastroenterology, Martini Hospital, Groningen, Netherlands. 19. Department of Gastroenterology, Gelderse Vallei Hospital, Ede, Netherlands. 20. Department of Gastroenterology, Jeroen Bosch Hospital, 's-Hertogenbosch, Netherlands. 21. Department of OR and Evidence Based Surgery, RadboudUMC, Nijmegen, Netherlands.
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. DISCUSSION: 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.
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. DISCUSSION: 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.
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