Participate in Research
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. It truly provides a feeling of hope for the future.
- Beth Walter, Sacramento, CA
One of the difficulties of researching the causes of FTD is that it affects a relatively small portion of the population. Scientists need to have a substantial body of patient and family data to study in order to learn about causes and identify potential targets for treatment. Research programs are critically important to this effort; it is only through the generous participation of patients and their families that we will advance our understanding of the FTD disorders and find a cure.
Many people find that partnering with researchers in the quest for knowledge helps them to feel a sense of control and draw meaning from the personal devastation of FTD. There are different kinds of research studies in which you may have the opportunity to participate. We encourage you to learn about them and consider participating.
An observational study tests hypotheses or measures certain outcomes using observational methods without any intervention or experimentation. A significant amount of important scientific learning about disease comes through observational studies, such as the natural course of the disease and identification of any other variables or conditions that tend to be associated with it.
A clinical trial tests the safety and effectiveness of new medical approaches in humans. In the U.S. all human trials are governed by strict guidelines of the Federal Drug Administration (FDA) as well as ethical review boards at each of the participating institutions. Certain eligibility criteria must be met for participation and a pre-defined protocol is followed. Clinical trials may also be called: clinical studies, medical research, or drug trials.
The direct study of human tissue and biological samples is critical to understanding the causes of disease and to developing treatments. Scientists’ knowledge of FTD and other neurodegenerative diseases is increasing rapidly thanks to families who participate in research through brain donation.
First Person Accounts of Research
Families often have many questions when they begin to consider participating in medical and scientific research. The pieces on this page are written by people who have taken part in FTD research and want to share their experiences with others. We are very grateful for their generosity as first hand experiences provide a unique and critical perspective on this issue.
Use the links on the right for more information about these opportunities.