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How to Participate in Clinical Trials

Categories: Being a Caregiver, Living with Brain Injury

By Greg Ayotte, CBIST, Brain Injury Association of America

Clinical trials are research studies in which individuals volunteer to participate. Before a clinical trial can begin, an ethics board reviews the trial and participants are selected based on pre-determined criteria. A participant chooses to participate or not after reviewing the possible risks and benefits of participation. Some studies will pay for people to participate in their research.

A common question people with brain injury and their families ask is, “Where can I find information on clinical trials for brain injury?” Locating clinical trials on brain injury can be challenging. There is not a single location where all brain injury clinical trials are listed. Due to the nature of brain injury, the many different challenges that can result from a brain injury, and the different types of research being done, individuals may have to consult a variety of resources and databases.

There are different stages and interventions that can occur during the brain injury recovery process. For example, during the acute stage, pharmacological interventions (i.e., studies involving medication) are geared toward minimizing secondary adverse consequences. During the post-acute stage, people with brain injury are medically stable but may have cognitive, physical or emotional impairments. Interventions may include medications, the use of devices, or specific therapeutic process designed to improve function. The information below offers suggestions about searching for clinical trials and resources to help families decide if participating in research is right for them.

Some Important Reminders:

  • There are no guarantees. You may search the clinical trial databases and find nothing. There is no guarantee that there is something out there that will help your particular situation.
  • The presence of a clinical trial does not automatically mean that you will qualify to participate, receive the treatment offered, benefit from the treatment, or be “cured” of brain injury. Researchers set up a study because they have reason to believe an intervention might work and need more information.
  • Discuss the information with your doctor before participating. Research trials are designed to be as risk-free as possible, but by their very nature are looking into the unknown. Take the time to read through all research material and ask questions.
  • Participation in clinical trials is a personal choice and may not be for everyone. Choosing to participate or not to participate is an individual decision that should be respected.

Things to Remember When Searching the Web for Research Trials

  • Search for local universities or large rehabilitation centers as both of these institutions tend to run clinical trials.
  • Some websites offer personal clinical trials notifications and will email updates on trials relevant to a person’s interest.
  • Some websites require user registration prior to a site search. Most sites only require you to register with an e-mail address.
  • Some websites may ask for your mailing address, name, and area of interest before they allow you to gather research trial information. Make sure you read their privacy policies before doing so.

The list provided below is not comprehensive. It is intended to be a helpful resource for persons starting to search for clinical trials.

For brain injury resources, contact the National Brain Injury Information Center at 1-800-444-6443 or visit biausa.org.

This article originally appeared in Volume 15, Issue 3 of THE Challenge! published in 2021.