Dear HelpLine,

I have FTD and have enrolled in a research study at a major medical center. My care partner and I travel to the site twice a year and get to see experts in FTD while we’re there. Do I still need to see a neurologist in my community?

It is understandable to want to limit your number of appointments. Why can’t you just rely on a research study for your medical care, especially when it feels so comprehensive and directly addresses your FTD? But clinical research and medical treatment (also called “clinical medical care”) serve different purposes. Both are important – particularly in a complex condition like FTD – and both contribute to your well-being and the well-being of others.

Clinical Research	Clinical Medical Care
Focuses on answering a specific scientific question with a research team	Individualized care to meet your specific health needs is provided by health professionals such as a primary care provider or neurologist

Clinical Research

Clinical research is when a person volunteers to take part in a research study to answer a scientific question. The study might be focused on testing the safety and effectiveness of a new drug, tracking how FTD develops and changes, or identifying biomarkers to improve FTD diagnosis and better predict its progression. These crucial efforts help bring us closer to an effective treatment and, in some cases, may improve your quality of life.

However, because clinical research is focused on answering a specific question, researchers must follow protocols and adhere to the study’s guidelines and stated objectives. In some studies, for example, neither you nor the clinical research team will know whether you have been given an effective medication or a placebo.

From a practical perspective, clinical research studies give you access to providers with expertise in FTD, but many research protocols have a clearly defined end point. If you rely on clinical research for your care, you will need to re-establish care with a new team once the protocol has concluded and may have to wait for an appointment. Your condition may also change in a way that makes you ineligible to continue participating in a specific research study.

Participating in clinical research contributes to advances that could help you and others in the future. But research is not a replacement for clinical medical care.

Clinical Medical Care

The goal of medical treatment, on the other hand, is to address a person’s current and future medical needs. FTD is a progressive condition, and its symptoms change over time. Having a doctor who knows your history and your evolving health needs is invaluable, especially when making decisions about future care (for example, whether to use of mobility aids, in-home care, or other resources).

Clinical medical care ensures that your specific health needs are prioritized and tended to as your condition evolves. Your medical care team can manage and adjust your medications, offer psychosocial support, or make referrals to address changes that may arise, such as changes in mobility or nutrition. The team may include a primary care provider, neurologist, psychiatrist, and other professionals, and will become increasingly integral to your care as FTD progresses. Regular clinical care ensures you always have consistent, ongoing medical attention, regardless of changes to the research landscape.

While clinical research protocols offer promising opportunities, they are not meant to be a substitute for the person-centered, ongoing care you get from your clinical healthcare team. Regular medical appointments ensure you receive comprehensive, personalized, and continuous care tailored to your unique situation. Keeping up with both ensures you are not just part of the search for answers, but also fully supported in managing your health right now. Together, clinical research and clinical medical care provide the best chance to manage your condition effectively while contributing to scientific advancements that benefit the broader FTD community.

	Clinical Research	Clinical Medical Care
Purpose	Answers specific questions through research involving numerous volunteer participants.	Personalized care addressing the needs of the person diagnosed.
Intended Benefit	Generally designed and intended to benefit future persons diagnosed.	Intended to benefit the person diagnosed.
Funding	Paid for by drug developers and government agencies.	Funded by the person and their health insurance plan.
Timeframe	Depends on the research protocol.	Requires real-time decisions.
Consent	Requires written informed consent.	May or may not require informed consent.
Assessment	Involves periodic and systematic assessment of patient data.	Based on as-needed personal assessment.
Protections	Protected by government agencies, institutional review boards, professional standards, informed consent, and legal standards.	Guided by state boards of medical practice, professional standards, peer review, informed consent, and legal standards.

Adapted from FDA.gov

To learn more about opportunities to participate in clinical research, consider joining the FTD Disorders Registry. You can also visit AFTD’s Ways to Participate page to learn more about how to join clinical research studies and similar opportunities to further FTD science.