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About the Registry

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, and industry. Our goal is to work together to bring treatments and cures to this spectrum of disorders (bvFTD, PPA, PSP, CBD and FTD-ALS).

The FTDDR is both a Contact Registry and a Research Registry. As a Contact Registry persons affected by FTD, their caregivers, family members, and friends can join and receive emails about FTD including important research updates and study opportunities. Contact Registry enrollment is open to the US and international community.

As a Research Registry, persons diagnosed, their caregivers, family members, and friends can provide their unique perspective to help us learn more about FTD. The registry will collect information from participants that will describe their entire range of experiences that result from a diagnosis of FTD. Every participant’s data will be confidential (see Privacy and Security) and data used for research purposes will be de-identified so that no personally identifiable information will ever be shared. Research Registry enrollment requires an individual to be at least 18 years of age and a resident of the US or Canada (19 years in those states or provinces where the age of majority is 19; Alberta, Saskatchewan, Newfoundland and Labrador currently excluded).

Persons diagnosed with FTD can join independently or with the assistance of a care-partner to help co-manage the account. In both instances the FTD diagnosed person is enrolling in the registry and providing his/her perspective of the disease. If the FTD has advanced to a point that symptoms won’t allow the FTD diagnosed person to answer questions for him/herself, we ask that a caregiver/family member/friend join the Registry themselves to help represent the voice of the FTD diagnosed loved one.

Current or former caregivers, family members, and friends are welcome 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 has passed away. Your perspective is important because in many instances you represent yourself AND the voice of your FTD affected loved one who may not be able to speak for themselves.

As a person diagnosed, family member, caregiver or friend, what can you do?

  1. Join the FTDDR Contact Registry to receive information updates about FTD and research studies.
  2. Register to participate in FTDDR research; it’s easy. Just create a password protected account, sign an informed consent form, and provide basic demographic information to complete your registration. We will assign you a unique identification code to protect your privacy.
  3. Become a citizen scientist by completing research surveys to provide your unique perspective.
  4. By participating in Registry research you will be providing information to help us all learn more about the FTD disorders. This increased understanding will help drive research and facilitate the ability to do clinical trials.
  5. Everyone’s participation is valuable! Whether it is a survey, research study or a clinical trial, participants who are affected and unaffected (control group) are needed. You can support FTD research just by being yourself and willing to volunteer to participate.

"Join the Registry. Share your story. Advance the science."

As a clinician, researcher, patient advocacy group, or pharm/biotech industry partner what can you do?

  1. Request access to a selection of the Registry’s centralized, aggregate, de-identified data via the Registry Director to answer a research question or help plan a study.
  2. Collaborate with the FTDDR to collect data important to your research or clinical trial design.
  3. Apply to the Registry to list your clinical study on our ‘Find a Study’ webpage or eBlast an announcement.
  4. Request artwork to share on your website that links to the Registry, or add the Registry to your literature for persons affected and their families.
  5. Visit the “For Researchers” page for additional information.

"Collaborate. Share the vision. Advance the science."

What can the FTDDR do for all the FTD community stakeholders?

  1. Provide a centralized registry across the entire frontotemporal disorders spectrum (bvFTD, PPA, PSP, CBD and FTD-ALS).
  2. Make the de-identified, aggregate data we collect available to support health outcomes research.
  3. Use Registry data to inform on the myriad issues in FTD, and thereby empower the FTD community to feel less isolated.
  4. Create an environment to inform on patient-friendly clinical trial design and to stimulate new conversations with regulatory and policy groups as they work toward patient-focused drug development.
  5. Support the efforts of pharmaceutical companies to drive therapies that could help to manage symptoms or treat FTD.
  6. Mobilize a national, and eventually international base of potential research study volunteers.
  7. Work to increase awareness and cultivate an environment of collaboration.

"Cultivate. Share the resource. Advance the science."

 

"Together, we can make a difference!"