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Your role as a care partner in the clinical trial journey

As a care partner, you play a crucial role in supporting your loved one throughout their clinical trial journey. This may include discussing treatment options with your loved one’s doctor to determine if a clinical trial is the right choice, coordinating appointments, providing transportation to study visits, managing medications, and tracking symptoms or side effects from the study drug. Clinical trials often require more frequent medical visits than standard care, which can affect your daily life. However, many care partners find reassurance in the additional monitoring and specialized attention their loved ones receive.

Helping a loved one decide whether to participate in a clinical trial

Participating in a clinical trial is a significant decision for your loved one. Before agreeing to participate, it is important to discuss the trial with their doctor to understand how it fits with their overall treatment plan and to ask about time commitments, potential costs, and how the trial might affect their daily life.

If you and your loved one think a clinical trial is right for them, you can ask their doctor about it. During discussions with their doctor, it is recommended that you take detailed notes and ask for clarification when needed.

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Navigating the clinical trial process

Clinical trials follow a structured process, including a series of screening, treatment, and follow-up visits that are described in a protocol. These may require frequent doctor appointments, tests, and/or treatments that may differ from the standard of care. You may need to help coordinate appointments, track medications, and document symptoms or side effects from the study drug. Staying organized and informed will help you and your loved one manage expectations and prepare for each step of the process.

The study team will serve as a key resource for you and your loved one. It is important to have clear communication with them to ensure that any concerns or questions that you may have during the study are addressed. As an advocate for your loved one, you help ensure that their voice is heard, their questions are answered, and they fully understand their rights as a study participant.

Support for care partners

As you provide essential emotional and practical support for your loved one, it is equally important to take care of your own physical, mental, and emotional well-being. Managing challenges, seeking support, and balancing responsibilities will help you and your loved one through this journey.

Below are some recommendations that you may find helpful:
  • Practice self-care such as exercise and meditation
  • Talk openly with family and friends
  • Join a care partner support group
  • Consider counseling or therapy
  • Ask for help when needed

Find answers to frequently asked questions about clinical trials.

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Glossary

C

Care partner: This can be a family member, close friend, trusted individual, or hired helper who provides ongoing support to an individual participating in a clinical trial. Care partners play a collaborative and involved role in both decision-making and practical assistance such as helping with daily activities, appointments, medication schedules, and symptom tracking, as well as providing emotional support throughout the clinical trial process.

F

Follow-up: Part of a clinical trial that happens after you finish treatment. It includes regular check-ins with the study team—like visits, phone calls, or tests—to see how you are doing, watch for side effects, and track how well the treatment may work over time.

P

Protocol: The official plan for how the clinical trial will be done. It explains information such as the purpose of the study, who can take part, what treatments will be given, how often visits or tests will happen, and what information will be collected. All doctors in a specific clinical trial follow the same protocol to keep the study consistent.

S

Screening: The step before officially participating in a clinical trial. During screening, the study team will do tests, ask questions, and review your medical history to see if you meet the eligibility criteria. This helps make sure that you are a good fit for the study.

Side effects: Unwanted or unexpected symptoms that can happen during or after receiving treatment. They can be mild, like feeling tired or having a headache, or more serious, depending on the treatment. In a clinical trial, all side effects are carefully watched and recorded to keep you safe.

Study drug: The investigational medicine(s) or investigational treatment(s) being tested in a clinical trial. It may be a drug that is not approved yet or a drug that is already used for other diseases but is now being tested in a new way or for a different disease/condition. The study drug is given to see how safe it is and how well it works.

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