Have you ever wondered about the opportunities that exist for enrolling in a clinical trial or participating in FTD research? While participating in medical research can be challenging, it can also provide you with unique access to medical expertise and the most current information on emergent treatments for FTD. It is also a way to contribute to the medical community’s growing understanding of FTD, and to offer hope to families currently confronting this disease, as well as those who will face a diagnosis in the future.

There are many resources available for identifying opportunities to get involved in FTD research, whether through clinical trials, observational studies, or brain donation.  We encourage you to monitor these resources regularly, so that as the opportunities expand, you remain informed.

AFTD is always on the lookout for studies and research opportunities that may be of interest to our community, which we publish and update regularly on the Featured Studies section of our website. This includes studies intended for both the person living with FTD and care partners.  You should be aware that each study establishes rules for participant inclusion and exclusion, and it is vital to the integrity of the research that these are adhered to strictly.

AFTD also partners with the FTD Disorders Registry, another valuable resource for finding FTD research opportunities. The registry is a secure electronic database that collects information from people diagnosed with any of the FTD disorders, their care partners, and family members. Their website provides up-to-date information about relevant research opportunities for FTD families.

Another quality source of information on FTD research is www.clinicaltrials.gov — a searchable database of privately and publicly funded clinical studies conducted in the U.S. and around the world. It is important to note that the appearance of a study on their website does not mean that the U.S. Federal Government has evaluated or endorsed that study. Consequently, many clinical trials that appear on the site are not regulated and/or reviewed by the U.S. Food and Drug Administration or any other governmental entity.

It is also important to know that you can reach out to academic research centers with an FTD focus directly to inquire about existing research opportunities. AFTD maintains a list of research and medical centers with a known interest in FTD for your reference. Many of these centers are also members of the ALLFTD research consortium, a groundbreaking partnership that merged two FTD studies that began in 2014. More information about ALLFTD can be found here.

Finally, for those contemplating possible participation in FTD research and wondering what they should expect, our spring 2017 issue of Partners in FTD Care provides information to assist families in their decision-making process.