For Families
By joining the FTD Disorders Registry, families help accelerate research and improve care. By contributing your lived experience, you provide valuable data that can lead to better understanding of FTD disorders, more effective treatments, and, ultimately, a cure. The Registry also connects families with research opportunities and resources, empowering you to play an active role in shaping the future of FTD disorders care and research.
WE VALUE YOUR TIME
The FTD Disorders Registry (the Registry) simplifies the process of finding research opportunities that align with your interests, schedule, and needs. By joining the Registry, you gain access to personalized notifications about studies that match your interests, including clinical trials, observational studies, or genetic research.
Registry participants also have the option of joining the Registry Research Study which allows people diagnosed with an FTD disorder, biological family members, and caregivers to contribute to critical research from the comfort of their own homes, without the need for travel. This flexibility empowers more families to get involved and make meaningful contributions to FTD disorders research.
RESEARCH UPDATES
Participants in the FTD Disorders Registry play a crucial role in advancing research, and they receive valuable insights and feedback on how their involvement is making a difference. By sharing updates on recent studies and breakthroughs, the Registry ensures families stay informed about the impact of their contributions, empowering them with knowledge about how their data is driving discoveries in FTD research. These updates offer families a deeper understanding of how their participation supports the quest for effective treatments and the hope for a cure.
HOW WE PROTECT YOUR DATA
The FTD Disorders Registry is committed to protecting your data with the best practices in security and privacy. All personal information you share is securely stored and strictly confidential. We de-identify your data and comply with privacy laws to ensure your data is safe. Your personal identifiable information is never shared. Your participation helps advance FTD research, and we prioritize protecting your information every step of the way.
Numbers have power. Join the Registry. Advance the science.
RESOURCES
Learn more about FTD disorders, caregiver support, and organizations that can help you and your family here.
Connect with Others
Spread the word about the FTD Disorders Registry. We have a toolkit of social media and information brochures available.
Email the Registry Director >
We want to hear from you!