Research not only fosters hope for a world without this disease – it also teaches us how to improve quality of life for people diagnosed with FTD today. Interest in and attention for FTD research is growing, and an expected increase in clinical trials can only move ahead with willing volunteers.
Is taking part in a specific clinical trial right for me?
Clinical trials are research studies designed to determine the safety and effectiveness of new medical interventions (drugs, treatments, medical devices, etc.). Every clinical trial follows a pre-defined protocol that includes:
- Clear criteria for eligibility.
- Detailed information about the purpose of the study.
- Who is conducting it, and the exact procedures.
- Risks and potential benefits.
Researchers will present essential information about a trial to potential participants, and should provide time to answer any questions. This information will also be presented in writing for participants to review and sign as part of an informed consent process for joining a study.
What can I expect?
Clinical trials have strict eligibility standards to ensure that results can be interpreted clearly. If a person is eligible, the research team will explain the study in detail, noting potential risks and benefits. After careful consideration, the interested volunteer will sign the informed consent and be enrolled.
Members of the research team will evaluate the participant’s health at the start of the trial and give the person specific instructions about the trial. The participant will be monitored carefully during the study according to the protocol, and typically will have some continued contact with the research team after the trial is finished.
Usually, there is no cost to the participant for study-related services, and travel expenses may be covered as well. But it is important to ask if any travel expenses are covered, and whether there is a maximum dollar amount for reimbursement.
How can I participate?
Participating in research brings hope for others affected by FTD – both today and in the future. There are various options to learn about how you can participate in clinical research is being conducted:
- Clinicaltrials.gov– A public registry, maintained by the U.S. National Institutes of Health (NIH), of federally and privately funded clinical studies on a wide range of diseases and conditions. Search for FTD-related terms: e.g. “frontotemporal degeneration,” “frontotemporal dementia,” names of specific FTD disorders, etc.
- NIH Clinical Center– The Clinical Center’s website offers information about clinical trials, why they matter and how to participate.
- FTD Disorders Registry: The FTD Disorders Registry also features ways to participate in research, to spur innovation that will lead to effective treatments and therapies.
- Observational studies– such as the major ongoing ALLFTD Study, a comprehensive natural history study focused on measuring and tracking the FTD disease process in preparation for treatment trials.
What is it like to take part in FTD research?
Read this AFTD case study about Anne, who has FTD, and her husband Paul, who facilitates her participation in research. The case study is part of AFTD’s Partners in FTD Care newsletter series.