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Participating in Clinical Research and Clinical Trials

What is a Clinical Trial?

Clinical trials are research studies that test new ways to prevent, find, or treat diseases. They are carefully designed and approved by health authorities. Before joining, it’s important to understand the purpose of the study, along with any possible benefits and 
risks. This helps you make an informed decision.

Participation is voluntary. You should discuss it with your healthcare provider, and you may also want to talk with family or friends. Choosing to participate (or not) will not affect your usual medical care.

Types of Clinical Research

There are two main types of studies:

• Observational Studies: Researchers monitor your health but do not change your treatment. These studies help doctors better understand how diseases develop and progress.
• Interventional Trials: These involve new treatments such as medications, medical devices, or procedures. They may aim to ease symptoms (symptomatic treatment) or slow disease progression (disease-modifying treatment).

Interventional trials are typically done in four phases to test safety, effectiveness, and long-term impact.

Where Can You Find More Information?

Ask your neurologist or specialist about current research studies. You can also visit:

• www.clinicaltrials.gov
• www.clinicaltrialsregister.eu
• www.michaeljfox.org/trial-finder

Charities and patient organizations related to your condition may also provide helpful information.

Your Role as a Participant

• Informed Consent: You’ll receive detailed information about the study, including its purpose, procedures, risks, and benefits. You must sign a consent form before starting. You may leave the study at any time without losing access to care.
• Following the Study Plan: If you join, you’ll be asked to follow certain steps like taking medication, attending visits, or sharing how you’re feeling.
• Monitoring: The research team will check your health regularly. This may include exams, lab tests, or other assessments to track your progress and safety.

Possible Benefits of Participation

• Access to New Treatments: You may be able to try new treatments before they are widely available.
• Close Monitoring: The research team may provide extra care and health checks.
• Helping Others: Your involvement could lead to new discoveries that benefit future patients.

Possible Risks of Participation

• Side Effects: New treatments may cause side effects, some of which may be unknown.
• May Not Help: The treatment may not work, or you may receive a placebo (a substance with no active ingredients).
• Random Assignment: In many trials, participants are randomly placed into different groups. Some receive the treatment, and others receive a placebo or standard care. In most cases, neither you nor your doctor will know which group you’re in.
• Time Commitment: Some trials require frequent visits or long-term follow-up.

Other Things to Consider

• Eligibility: Not everyone can join every study. Trials have specific rules based on age, condition, treatment history, and other health factors.
• Costs: Some studies cover all expenses; others may not. Ask the study team what is included.
• Privacy: Your personal and medical information will be kept confidential.
• Long-Term Follow-Up: Some trials may continue for months or years after treatment to check long-term results.

Talk to your doctor to decide if a clinical trial is right for you. Participation is always your choice.