The FTD Disorders Registry (FTDDR) is designed to bring together the frontotemporal degeneration (FTD) community. This means persons diagnosed, their family members, caregivers, and friends as well as clinicians, scientists, patient advocacy groups, and the pharma/biotech industry.
Our goal is to advance the science and move faster toward finding treatments and cures for this spectrum of disorders, which includes:
- behavioral variant FTD (bvFTD)
- primary progressive aphasia (PPA)
- progressive supranuclear palsy (PSP)
- corticobasal degeneration (CBD) / corticobasal syndrome (CBS)
- FTD with motor neuron disease (also called FTD-ALS)
A diagnosis of FTD can be isolating, so the Registry was created to be a resource for patients, families, and caregivers. We provide one location to collect and share de-identified data, promote research studies, and notify potentially eligible research study candidates.
The FTDDR is both a Contact Registry and a Research Registry. (See eligibility chart)
Contact Registry — Receive emails about FTD and the Registry, including news and general research updates. Contact Registry is open to U.S. and international enrollment for persons 18 years old or older.*
Research Registry — In addition to receiving emails about FTD, these registrants are sent study notices and can complete surveys to help researchers better understand FTD. Research Registry enrollment requires that participants are:
- at least 18 years of age*
- residents of the United States or Canada*
- able to actively participate in answering survey questions, even with the help of a care partner
*19 years in those states or provinces where the age of majority is 19; Alberta, Saskatchewan, and Newfoundland and Labrador currently excluded
Research Registry participants are automatically enrolled in the Contact Registry.
Persons diagnosed with FTD can join independently or with the assistance of a care partner. In both instances, the FTD-diagnosed person is enrolling in the Registry and providing his/her perspective of the disease.
Current or former caregivers, family members, and friends are also invited to join the Registry and provide information about how FTD has affected your life and the life of your loved one. You are encouraged to join whether or not your loved one is a member of the Registry, or even if your loved one is no longer living. Your perspective is important because you represent yourself AND the voice of your FTD-affected loved one who may not be able to speak for himself/herself.
For Scientists, Physicians, Patient Advocacy Groups, Biopharma, and Biotech Industries
The Registry also brings value to industry partners through engagement and research opportunities. This can include collaboration for:
- study design
- participant recruitment and retention
- data collection
- communication outreach
- community education and empowerment
Our goal is to provide a centralized registry across the FTD spectrum.
- We incorporate participant voices to advance patient-centered research.
- We make de-identified FTD Registry data available to diverse stakeholders to support health outcomes research.
- We serve as a resource for FTD clinical trial enrollment by providing high-quality, aggregate data and a base of potential research study volunteers.
- We share research studies of interest to patient advocacy groups, scientists, and physicians.
History of Growth
The FTD Registry was established in March 2015 as a shared vision between The Association for Frontotemporal Degeneration (AFTD) and The Bluefield Project to Cure Frontotemporal Dementia. We received nonprofit 501(c)(3) status in March 2016 and launched for public enrollment on March 28, 2017, giving birth to a shared vision to create a patient registry for the frontotemporal disorders (FTD) community.
When the Registry opened for enrollment on March 28, 2017, we exceeded our two-week goal of 100 registrants in less than 24 hours. Not only were enrollment goals broken on the first day, but also for each subsequent enrollment anniversary for the first five years.
Through these years, the Registry has grown to include persons from all 50 U.S. states and more than 30 countries, with the majority of international participants residing in Canada, Australia, and the United Kingdom.
We envision a world in which research on FTD is a robust, collaborative, and effective enterprise among researchers, persons diagnosed, care partners, and those at risk.
Read about our vision, mission, values, history, and more in our 2020-2022 Strategic Plan.
The combined voices of our registrants empower the FTD Registry to inform on more patient-friendly clinical trial design and to stimulate new conversations with regulatory and policy groups as they work towards patient-focused drug development.
Learn how you can raise awareness about FTD and the FTD Disorders Registry and help make a difference in the lives of others.