FTD Disorders Registry
The Rainwater Charitable Foundation has been a major funder of the FTD Disorders Registry since its inception. It went live in March 2017, and is available to diagnosed persons, family members, and friends who are interested in all forms of Frontotemporal Dementia, including PSP. As of June 2020, it had more than 3,500 registrants.
The FTD Disorders Registry is a major advance for the field, and is more than a patient recruitment tool- it’s a true research platform. The platform is capable of securely collecting and exchanging patient data with other research projects, including clinical trial sponsors. It is also able to administer IRB-approved online studies via questionnaires (e.g., tracking symptom progression over time).
Within just a few weeks of its public launch, the registry surpassed its first-year goal by enrolling hundreds of patients. Public reaction has been very positive. The Director of the National Institute of Neurological Disorders and Stroke (NINDS) publicly proclaimed that the FTD Registry was “a well-designed registry that will enhance knowledge and research capabilities.”
To explore the registry, please click on this link: https://ftdregistry.org.
PSP Research Roundtable
Progressive Supranuclear Palsy is a pure tauopathy and an orphan disease. It has attracted industry attention as a significant unmet medical need and an important steppingstone to new therapies for Alzheimer’s, Chronic Traumatic Encephalopathy, and Frontotemporal Dementia. While there have been some successes in getting treatments to clinical trials, greater collaboration is needed to ensure that we understand how efficacious these treatments are and why the unsuccessful ones fail.
In 2017, the Rainwater Charitable Foundation and CurePSP stepped forward to create the PSP Research Roundtable on behalf of the field. Member companies joined throughout the year, and the group convened for the first time in June 2018 in Washington, DC.
The PSP Research Roundtable is a pre-competitive collaboration involving patient advocacy organizations, key thought leaders from academia, and leading bio-pharmaceutical companies. Its mission is to represent the field in addressing bottlenecks and accelerating the development of new treatments for PSP and other primary tauopathies. Specific priorities for the Roundtable are defined on an annual basis by a consensus-driven steering committee.
To learn more about the PSP Research Roundtable, please go to this site for information.