Ways to Participate
My husband and both his brothers, all taken by FTD, participated in extensive research studies. It was an important decision for our family since there is so little known about this terrible disease. Only with knowledge can we hope to find treatment and a cure, and the best knowledge we can gain comes from patients and their families.
-Beth Walter, AFTD Board Member, Sacramento, CA
Although the known number of FTD cases in the United States today is very likely undercounted, the reality remains that the disease affects a relatively small proportion of the population. Researchers who study FTD face a dilemma: They need to have a substantial body of data from individuals diagnosed and families to obtain accurate information about the disease’s causes and develop effective treatments.
When persons diagnosed and their families choose to take part in research, they can help to advance the understanding of the FTD disorders and find treatments and a cure. There are different kinds of research studies in which you or a loved one may be able to participate. Click below to learn more about each type:
- Observational Studies
- Clinical Trials
- Brain Donation
- Brain Autopsy
- The FTD Disorders Registry – founded by AFTD and the Bluefield Project to Cure Frontotemporal Dementia – offers another powerful way to advance the science of FTD research.
Many people affected by FTD find that partnering with researchers helps them to draw meaning from a disease that can bring so much personal devastation. And what brings meaning to these families can bring hope and inspiration to so many others.