Research not only fosters hope for a world without this disease – it also seeks tools to reduce disease symptoms and improve quality of life for people diagnosed with FTD today. Interest in and attention for FTD research is growing, with active and emerging clinical trials that can only move ahead with willing volunteers.
Is taking part in a specific clinical trial right for me?
Clinical trials are a type of research study designed to determine the safety and effectiveness of new medical interventions (drugs, treatments, medical devices, etc.).
Every clinical trial is different in what it asks of participants and in the potential benefits and risks that participation may bring. Before researchers begin to recruit participants, they are required to define a protocol that is then reviewed by an ethical oversight board. That protocol includes:
Clear criteria for eligibility. At this time, many current clinical trials are designed for people with specific genetic variants associated with FTD (see https://www.theaftd.org/ftd-genetics/what-causes-ftd for more information on genetics and FTD).
- 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. In most cases, people with FTD enrolling in clinical trials will need someone they know to be a designated study partner.
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.
People interested in participating in a clinical trial should also ask the clinical trial site team about expectations and procedures for when the trial ends. For example:
- Will I receive any of my personal results? What about the overall study results?
- Can I find out if I was on the experimental treatment or the placebo?
- Can I continue taking the treatment after the trial ends?
Sometimes, clinical trials end earlier than initially planned. This could be due to a variety of reasons, such as early analyses showing an experimental treatment appears to be working; early analyses showing the treatment does not appear to be working; or due to adverse events, such as serious side effects. You can ask the clinical trial site team about what to expect if that occurs.
How can I find out more about clinical trials and other research opportunities?
- Join the FTD Disorders Registry – The FTD Disorders Registry is a key resource to learn about FTD research opportunities. People with FTD, their care partners, and family members can also choose to participate in FTD research surveys through the Registry, to share insights on the lived experience of FTD that, in turn, can guide research.
- Consider genetic testing – Many FTD clinical trials need participants with a specific genetic background. Learn more about genetic testing and counseling from AFTD’s website here and be sure to talk with a genetic counselor before making your decision.
- Talk with your physician.
- Check out Clinicaltrials.gov – A public database, 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.
- Read more at NIH Clinical Center – The Clinical Center’s website offers information about clinical trials, why they matter, and how to participate.