Every drug, procedure or treatment that becomes available to manage diseases and prevent illness starts with a clinical trial where it’s tested and evaluated for safety and effectiveness. These trials provide researchers and medical professionals a chance to evaluate the potential benefits of a new therapy, as well as identify patients who might be at a higher risk of side effects or adverse reactions.
Trials involve both healthy participants who want to help develop a new medication or methods of diagnosis as well as those with the illness or condition being studied. And in addition to the numerous scientific advances each participant can contribute to – not to mention helping to improve the lives of countless patients still to come – participating in a clinical trial can also have a powerful effect on how an older adult approaches their own treatment, as Silvia Hafliger, MD, explained:
“In the face of a debilitating disease, patients’ ability to be proactive can provide a sense of autonomy and make them feel like true partners in their own treatment.
Why should your loved one sign up for a clinical trial?
Clinical trials are crucial to the continued improvement of the health and well-being of everyone, but especially older adults, who often face many medical challenges as they grow older.
Many seniors have chronic conditions or acute illnesses that are difficult to treat with available drugs and other treatment plans. A clinical trial offers the opportunity to be first in line to receive a new treatment or therapy, and clinical trials can benefit both the participants and those who may need help in the future.
In addition, some clinical trials offer payment to those who participate, an added incentive to sign up.
Who runs clinical trials?
Clinical trials involve many professionals – including scientists, researchers, doctors, nurses, social workers, data managers, and trial coordinators – who carefully evaluate patient reactions, information about trial results, and other pertinent information. The priority is always keeping volunteers safe and healthy while they participate in the process.
As Stephanie Graff, MD, at the Sarah Cannon Cancer Institute at HCA Midwest Health, explained, clinical trials are created and managed by skilled members of the scientific and medical community:
“Clinical trials are not designed by one doctor on the fly … Trial design includes a large collection of many of the brightest minds in medicine—nationally recognized physician thought leaders, pharmaceutical industry pioneers, large collaborative international workgroups, disease-specific patient advocates, and experienced regulatory oversight … If we didn’t think the experimental arm had a chance to improve outcomes, the trial would never happen.”
What are the types of clinical trials?
Clinical trials are designed to evaluate various treatments, therapies, and diagnostic tests, including:
- New combinations of drugs or newly developed drugs
- New methods of doing surgery
- New medical devices
- New uses for available treatments
- Further behavioral modifications to improve quality of life and health for both acute and chronic illnesses.
The various types of studies include preventive trials, screening trials, diagnostic trials, treatment trials, genetic studies, quality-of-life studies and epidemiological studies.
How do you find a clinical trial?
Clinical trials are being conducted all around the world all the time. Researchers are in constant need of participants, both healthy people and those who are ill. In addition to recommendations from your loved one’s physician, search for trials near you on these websites:
ClinicalTrials.gov – This searchable registry lists both federally and privately funded projects. You can access both ongoing trials and the results of past trials.
National Institutes of Clinical Center – The National Institutes of Health conducts trials at its Bethesda, Maryland center and across the country. You can search by diagnosis and location to find a clinical trial near you and relevant to your situation.
Research Match – Research Match is a registry for those looking to participate in clinical trials, and the service matches participants with studies that need volunteers and participants.
Center Watch – This site lists clinical trials around the world and allows you to check your eligibility.
What should you know about signing up for a clinical trial?
Not every clinical trial will be the right fit for your loved one. For example, cancer treatment clinical trials may not focus on the type or variant of cancer that your loved one has.
Reach out directly to the clinical trial organizers (if you have their contact information), who are as invested in finding the right people for their research as you are in finding help for your family member.
Make sure the protocol for the trial is not too difficult or taxing for your loved one if they are ill, and make sure you and your family member are clear on what informed consent means and how it will impact your experience with the clinical trial. Remember, even if your senior adult signs up and starts the trial, there’s always the option to leave the trial if it’s not working for them.
Harvard Health recommends asking these questions:
- Are there alternative treatments other than the one used in the trial?
- How will you monitor my safety during the trial?
- After the trial ends, can I opt to stay on (or switch to) the treatment being tested if it proves successful?
- What happens if the trial harms me?
Unfortunately, those over 65 are under-enrolled in clinical trials, even though, for example, they are diagnosed with half of all cancers every year. If you are eager to get your family member enrolled in a clinical trial, ask their physician if they have any patients around the same age who have participated in a study and might be willing to discuss the experience. Hearing about it from a peer could be the way to get them to consider participating in a trial.
As a caregiver, it’s often up to you to convince your family member to be open to getting involved with what is perhaps an intimidating or scary idea. After all, taking part in something with so many unknowns that involves their long-term health may seem overwhelming. If you can translate the scientific and investigative ideas presented by the doctors or researchers and make them more personal and specific to your loved one’s situation, it will help them understand how being part of a clinical trial could potentially make their life better—and improve the lives of others as well. You are the advocate for your loved one’s health and well-being.