By becoming involved in clinical trials or surveys, you can make your voice heard and benefit others.
Posted in , Sep 16, 2021
Julie Hayes is the Content Manager at Benjamin Rose Institute on Aging.
As you search online for information on caregiving-related topics, it’s not unusual to come across references to associated research that may be underway or in development. It could be that a particular clinical trial, study or survey has sparked your interest and you’ve considered the possibility of becoming involved—either with or without your loved one. Research on diseases and conditions, as well as the caregiving experience itself, can be valuable and instructive. For example, findings may shed light on how your own journey compares with those of other caregivers and their loved ones. Study results can also keep you apprised of the latest information on disease research and caregiver support, and give you added insight into what your loved one is experiencing.
You and your loved one may want to become involved in a particular study in order to make your voices heard, relate what you’ve experienced and help improve the lives of other people who are in similar situations. But you may be reluctant because you don’t know much about these studies or how to go about participating.
What are the benefits of getting involved in studies?
Participating in research offers numerous important benefits. Participants have the opportunity to:
Where can I find opportunities to become a research participant?
If you wish to participate in a research study, you may want to begin by contacting one of your loved one’s service providers—including a home care agency, social worker or senior center—or a disease-specific organization like the Alzheimer’s Association. A number of researchers work with service providers and nonprofit organizations to recruit participants who meet their criteria.
You can also find research study and clinical trial search tools online. The National Institutes of Health has a searchable database of opportunities at clinicaltrials.gov where you can search for keywords that match your situation, like “caregiver” or “heart disease.”
If you’re planning to get involved in a clinical research study with your loved one, make sure to speak beforehand with his or her doctor, and yours, as well. Certain studies could interfere with specific treatments or prescription drugs, so it’s important to make sure that you and/or your loved one are able to participate before confirming your involvement. You may also want to talk to other members of your loved one’s care team for more information on how the study might impact him or her. If a clinical trial won’t work for either of you, you may want to look into participating in survey research as an alternative. The Family Caregiver Alliance’s research listings include many survey and questionnaire-based studies conducted by both industry professionals and graduate students.