National Registry of Wilson Disease Patients – pilot study (November 2010)

In November 2010 BAPES together with the Bulgarian Association “Wilson Disease” started a joint project – National registry of Wilson disease patients. A standardized registration card, developed by BAPES and covering a minimal data set, was used. Medical professionals from the gastroenterology departments of the university hospitals have help filling the cards. A total of 158 patients were identified by the pilot survey. Men were 56.25% (89 persons), women – 43.75% (69). Average age of the patients was 33.96±0.97 years, varying from 9 to 65 years. Patients are treated and followed up in 5 university centres – “St. Ivan Rilski” University Hospital, Sofia (47.47%), University Pediatric Hospital, Sofia (4.43%), “St. George” University Hospital, Plovdiv (10.76%), “St. Marina” University Hospital, Varna (25.95%), “Dr. G. Stranski” University Hospital, Pleven (11.39%).