Article
Participating in a Clinical Trial: Building A Support Network
By paigel|Dec 13, 2021
From “The Gift of Participation” by Ken Getz, Founder & Board Chair, CISCRP
Another important part of the human side of clinical trials is the support network that you create. Study volunteers are not alone in their clinical trial participation. Your decision to participate in a clinical trial is best made with input from the people you know and trust. Your network should include your family physician or specialist who has previously been treating your disease or condition. Your primary-care and specialty nurses may be very helpful in sorting out your identification of a clinical trial and the risks and benefits of participating in one.
Perhaps no one has a greater interest in your well-being as a potential study subject than your family and friends. They will want to be actively involved in the decision-making process. Young children rely on their parents or guardians for support and guidance. Parents in their later years may well depend on their adult children. Whatever your support network, you need to draw comfort, assistance, and resolve from your family, friends, and advocates in order to determine if a clinical trial is right for you. And once you’ve enrolled in a trial, you may need to tap that support network for aid, all the way from ongoing encouragement and advice
down to transportation to and from the research center.
Many medical conditions have special support groups and communities that can help assist in evaluating clinical trials as treatment options. You can find information about local and national patient advocacy and support groups online, in primary care centers, hospitals and in public libraries. There are also a growing number of online self-help groups that provide up-to-the-minute information on new drugs and treatments, as well as electronic bulletin boards and chat rooms where patients can share their personal stories and experiences with both standard and investigational therapies.
For more information on clinical trials and making informed decisions about volunteering for clinical research, read “The Gift of Participation” by Ken Getz, Founder and Board Chair, CISCRP.
