BC has developed a first of its kind registry that aims to include all British Columbians with polycystic disease, regardless of disease or treatment status. The comprehensive clinical data made available through the registry will support improved individual patient care and improve our understanding of the disease, which will benefit all people living with ADPKD.
The registry is housed within PROMIS, a powerful information system managed by the BC Renal Agency that serves as a database for British Columbians with kidney disease. In the past, people living with ADPKD were enrolled in PROMIS at later stages of the disease when they required more specialized nephrology care. While this model works well for other forms of kidney disease, in ADPKD, new treatments and changes in care are likely to be of most benefit when initiated early in the disease course. Enhancing data capture at this stage of the disease will enable better patient care.
Through the ADPKD registry, aggregate and anonymized data on patient demographics, clinical characteristics, treatments and outcomes will be available to all nephrologists in the province to help assess patient care and enable quality improvement. As the data steward, the BC Renal Agency will ensure best practices and patient privacy.
For patients or family members living with ADPKD who have questions about this registry, please see the frequently asked questions document below.
Information on Enrollment in the ADPKD Registry
At present, registration in the database is not automatic; this must be completed at the point of care. For clinical staff involved in this process, the following link contains instructions for enrolment of your patients in the ADPKD registry. To enhance the data collected for the registry, we ask programs to complete and information form when patients are seen in the office, and fax it or the current clinic dictation in for upload into the registry. This information sheet is also available below.