Patient Registry
At APBDRF, we believe that every patient’s unique experience holds the key to advancing research and finding a cure for Adult Polyglucosan Body Disease (APBD). By sharing your story, you help accelerate discoveries, shape the design of future clinical trials, and ensure that the voices of patients and families remain at the heart of every step forward. By joining our patient registries, you become an essential part of this progress. Together, we can drive meaningful change and come closer to the answers we urgently need.
👉See below to learn more about our two patient registries and enroll today. Your participation is completely voluntary and confidential.
CAP Registry
Since May 1, 2014, the APBD Research Foundation, together with a dedicated team of researchers and clinicians at Columbia University, has established and maintained the first-ever APBD Patient Registry. Open to both individuals diagnosed with APBD and their family members, the registry collects vital information, including demographic details, family history, clinical data, and results from physical and neurological evaluations. Participants have the option to enroll anonymously, with their physician serving as the point of contact.
Click here for instructions for physicians to enroll on a patient’s behalf
The Importance of a Patient Registry
A Patient Discusses the Power of the Registry
How Your Information is Protected
Patient data is encrypted and stored in secured servers with 24×7 security by Columbia University
All data and web communications are encrypted
Access to the data is by authorized Columbia University personnel, using secured passwords
Only de-identified data is provided to authorized parties who have been approved by the APBD Research Foundation in accordance with federal regulations
Patients can request to enroll anonymously and/ or limit the data they provide
All direct communication with enrollees with done only through the Columbia team
NORD Registry
The APBD Research Foundation has also partnered with National Organization for Rare Disorders (NORD) to maintain another patient registry to study the impact of APBD over a period of years.
Both registries serve a unique purpose in the broader effort to understand, treat, and ultimately cure APBD. Having multiple registries allows researchers to gather complementary data, engage more diverse populations, and cross-validate findings, all of which accelerate progress.
Together, these registries provide a more complete picture of APBD and increase opportunities for patients to contribute in the ways that work best for them.