ADPKD is a lifelong disease where patients develop clusters of cysts -- noncancerous round sacs containing water-like fluid. As time goes on, more cysts develop and the cysts grow in size. The disease course experienced by people living with ADPKD is quite variable, from minimal impact on kidney function to rapidly progressive disease that results in kidney failure at a young age.
There is no cure for ADPKD at this time, but research in recent years has led to improved tools for diagnosing and predicting the expected course of the disease, as well as treatment strategies that may slow the progression of ADPKD in some people.
As part of BC Renal's overarching priorities of optimizing patient experience and outcomes as well as innovation and research in renal care, we have developed and implemented a provincial ADPKD strategy in BC's renal programs that supports equitable and sustainable care for patients and families living with ADPKD.
This includes:
- An ADPKD advisory group of interdisciplinary renal health professionals from across the province to support program development and implementation
- A framework for delivery of best practices in ADPKD care within BC Kidney Clinics, which complements and enhances existing Kidney Care Clinic best practices
- Educational tools and resources that support delivery of interdisciplinary ADPKD care in collaboration with other healthcare disciplines.
- A comprehensive provincial registry of ADPKD patients that informs ongoing quality improvement and research efforts.
- A dissemination strategy that supports BC Renal knowledge sharing and research efforts.
