Published on August 30, 2022 | Next weekend, we celebrate a very important day to the PKD community—PKD Awareness Day. Every year, September 4 is dedicated to educating friends, families, and communities about PKD. Awareness can look like a lot of things. Sharing your PKD journey on Voices of PKD. Starting a Fundraise Your Way fundraiser to raise donations for PKD research. Posting PKD facts on social media. But there’s another way that may not always come to mind: joining the ADPKD Registry.
How can the ADPKD Registry Be Part of PKD Awareness Day?
In 2019, the PKD Foundation launched the ADPKD Registry to collect de-identified data from individuals with autosomal dominant polycystic kidney disease (ADPKD) about their personal journeys with the disease. Patients are experts in their disease experience. By sharing details on their family histories, pain and fatigue, and PKD’s impact on their life, researchers can learn more about how the disease works. Those details will help inform research into new treatments and a cure.
And the Registry is already seeing benefits from patients sharing their personal journeys with PKD.
ADPKD Registry Achievements
Once we received data from over 1,500 participants, we decided to write about what we learned in the past three years. Published in Kidney360, “Design and Basic Characteristics of a National Patient-Powered Registry in ADPKD,” is an article jointly written by PKD research staff and PKD researchers. Through the ADPKD Registry, they’ve:
- Revealed quality of life burden scores correlated with disease stage as determined by kidney function
- Seven clinical studies have used the Registry as a recruitment tool
- Utilized two validated outcome measures: the ADPKD-pain and discomfort scale and the ADPKD impact scale
- Highlighted underrepresented groups that needed recruiting to improve representation
At the 2022 National Kidney Foundation Spring Clinical Meeting, more details from patient modules were shared. We outlined demographics of the Registry by chronic kidney disease stages. In addition, we highlighted frequency and type of kidney pain that patients were experiencing.
Advocacy Spreads Awareness and Supports the ADPKD Registry
If you’re a friend, family members, or caregiver without PKD, there’s another great way to honor PKD Awareness Day and support the ADPKD Registry. Become a PKD advocate. The Advocacy Champions Network (ACN) is a group of PKD community members from across the U.S. advocating with federal policymakers. Members of the ACN are hand-picked to share their personal stories and advance the legislative priorities of the PKD community, including the Living Donor Protections Act. (LDPA).
Even if you don’t have time for the ACN, you can still advocate. Try calling or emailing your elected officials about the Living Donor Protections Act. Sharing your personal stories and experiences with policymakers does make a difference, just ask Glenn Frommer. While stopping through Shawnee, Kansas on his RideForPKD, he met Representative Sharice Davids. She asked if there way anything she could do to support PKD, so Glenn mentioned the Living Donor Protections Act. Today, Davids is now a proud co-sponsor of the LDPA.
Each of us can make a difference on PKD Awareness Day. Joining the ADPKD Registry and becoming an advocate are only two of the many ways you can spread awareness. For more inspiration, check out our webpage on all things PKD Awareness Day.
The PKD Foundation is the largest private funder of PKD research in the U.S. Since 1982, we’ve proudly funded more than 1,300 research projects and leveraged $1.5B in research funds. Each year, the Foundation identifies and supports the work of scientists and researchers from around the world who look for ways to treat and eventually cure PKD. Our vision is to #endPKD. However, donations are necessary to fund research that leads to more effective treatments and ultimately a cure for PKD.