Clinical Trials

Once you decide that a clinical trial may be right for you, understanding what participation involves can help you feel prepared and confident. This page explains what to expect during a clinical trial, your rights as a participant, and the supports available to you.

What participation may involve

Participation in a clinical trial can look different depending on the study. Some trials involve frequent visits and testing, while others require minimal involvement.

Depending on the study, participation may include:

• Clinic or hospital visits
• Physical exams or imaging
• Blood tests or other lab work
• Questionnaires about symptoms or quality of life
• Taking a study medication or following a specific care plan

Some trials require travel to a specialized center, while others allow partial or fully remote participation. The study team will explain what is required before you decide to enroll.

Informed Consent

Before joining a clinical trial, you will be asked to review and sign an informed consent document. This document explains:

• The purpose of the study
• What participation involves
• Possible risks and benefits
• How your information will be used and protected

Informed consent is not just a form—it is a process. You have the right to ask questions, take time to review the information, and discuss it with your healthcare team or family before making a decision.

Your Rights as a Participant

As a clinical trial participant, you have important rights. These include:

• Participation is voluntary
• You may choose not to join or to leave a study at any time
• Leaving a study will not affect your standard medical care
• You have the right to ask questions and receive clear answers
• Your privacy and personal health information are protected

You remain in control of your care throughout the study.

Potential Benefits and Risks

Clinical trials may offer potential benefits, such as access to new treatments or closer medical monitoring. However, benefits are not guaranteed, and outcomes can vary from person to person.

There may also be risks, including side effects or unknown responses to a treatment. The study team will explain known risks and what is being done to monitor safety.

Deciding to participate means weighing possible benefits and risks based on your individual situation, values, and goals.

Support During a Clinical Trial

You are not alone during a clinical trial. Support may come from:

• Your primary healthcare team
• The clinical trial study team or coordinator
• Family members or caregivers

LGDA does not recommend specific clinical trials, but we are committed to providing education and trusted information to help patients and families understand the clinical trial process and prepare questions for their care team.

If You Have Questions

It is normal to have questions or concerns before, during, or after participation in a clinical trial. If something is unclear, you should feel comfortable asking your healthcare provider or study team for more information.

Taking part in a clinical trial is a personal decision. The right choice is the one that feels best for you and your family.