How to Participate in a Clinical Trial for Multiple Sclerosis

While there is no cure for multiple sclerosis (MS), research is ongoing through clinical trials. Clinical trials allow researchers to evaluate the effects of interventions like medications, exercise, environment, and healthcare services on people living with MS. Clinical trials also look for better ways to diagnose, prevent, and screen for the condition.

This article discusses the importance of clinical trials for MS, the risks of participation, how to apply for a trial, and what to expect once enrolled.

The Importance of Clinical Trials

Clinical trials are important for medical advancements in preventing, diagnosing, and treating diseases. Clinical trials can evaluate new drugs, surgery techniques, medical devices, and different ways to use current treatments.

Trials may look at how to change behaviors to improve health or improve the quality of life for people living with chronic illness and other diseases. MS clinical trials help develop safe and effective treatments and interventions to improve life with MS.

People with MS may choose to participate in clinical trials to help others and to further science. At the same time, they may benefit from a new treatment or enhanced care from the clinical trial team.

Risks of Participating in Clinical Trials

The U.S. government has established strict guidelines to keep participants in clinical trials safe. Health data of the participants are well protected to preserve privacy.

However, there are risks to participating in clinical trials. Each trial comes with its own risks and it is important to ask questions before participating.

In general, risks of participation include:

• Side effects: These may be uncomfortable or undesirable.
• Failed treatment: The new treatment may not work or may not work as well as the standard treatment or the treatment you were on.
• A general inconvenience: You may need to travel to the study, have lengthy or frequent medical appointments, or stay in the hospital.
• No treatment: You may be part of a placebo (inactive treatment) control group and not receive the new treatment. A placebo-controlled study will be designed under strict ethical guidelines. Placebo-controlled studies are no longer the norm for MS clinical trials.
  

How to Apply for MS Clinical Trials

Each MS clinical trial has its own application process. Your healthcare provider may have information about relevant trials and how to apply. There are also other ways to find a multiple sclerosis research trial and learn about the application process online:

• The National Multiple Sclerosis Society has a search engine where you can look for trials in your area.
• The National Library of Medicine’s clincialtrials.gov provides a searchable database of clinical trials conducted around the world.
• CenterWatch is the largest worldwide listing of industry-sponsored trials with a searchable database.
• The National Institute of Neurological Disorders and Stroke has a searchable site where trials that are currently recruiting participants can be found, along with completed and in-progress trials.
• The NARCOMS global patient registry maintains a database of people with MS. The site allows people with MS to share their experiences with the disease and enables researchers to connect with willing participants.

Eligibility 

While each clinical trial has specific eligibility requirements, a participant often must meet these general requirements:

• Live close to the research facility
• Have a specific diagnosis
• Meet the study guidelines in regard to the duration of disease, level of disability, age, and sex
• Be able to give consent
• Fully understand the risks of participation
• Be willing and able to follow study instructions

What to Expect

When participating in a clinical trial, you can expect to have questions. You will want to know as much as possible. Also keep your healthcare providers informed of the study.

Before entering a study, you should understand fully what the study entails, how long it will last, the purpose of the study, how often you will have to travel to the study location or check in with researchers, whether there are costs involved, and if you will be compensated or reimbursed for expenses.

If the trial’s objective is to study the effectiveness of a new treatment, find out how the study is being controlled—will a placebo be used or will you be able to remain on your current medications or an established medication if you are placed in the control group?

Talk to your current healthcare providers about the study to coordinate your care and to ensure you remain safe throughout the trial. Ask questions about the possible risks, side effects, and benefits.

Once you are accepted into a trial you will be provided an informed consent form. This form will give details about the study, the procedures and schedule, potential risks and benefits, and alternatives to the study. Make sure you fully understand this document and get answers to any questions from the researchers.

After entering a study, if you choose to leave you are free to do so at any time. Simply inform the researchers of your reason for leaving.

Summary

Clinical trials for MS help in the development of new treatments and therapies. Finding a trial and confirming eligibility for the trial can be done through your healthcare provider or several different websites provided by the government, the National MS Society, and the medical industry.

There are risks and benefits to all trials. When entering a trial, it’s imperative to stay informed.

A Word From Verywell

Participating in a clinical trial for MS can be a rewarding experience. Participation furthers science and allows for new treatments and medical advances to take place. You may also benefit personally by having access to promising therapies or treatments before they are released to the general public.

However, participation is not without risks, and it’s important to talk with your healthcare provider if you are considering entering into a clinical trial. Make sure you are fully informed of the benefits and risks of a study before you provide consent.