MG Clinical Trials       

Thinking of participating in a clinical trial?

by Julie Rowin, M.D.

Whether to participate in a clinical trial is a personal decision. There are many aspects to consider including the potential benefits, safety issues, and practicality of participation.  This article is meant to serve as a guide to patients with MG to help with making this personal choice.

1. If you are considering participating in a clinical trial, be informed about what clinical trials are available. Your physician, nurse, and national organizations such as MGFA or the MGFI are a good place to start. Your physician or MG organization will have contact phone numbers for the center running the clinical trial. The center should be more than willing to discuss what is involved in participation and answer all your questions about safety, time commitment, etc.

The following list of questions from the National Institute of Health's website,  http://www.clinicaltrials.gov , may help.

·         What is the purpose of the study?

·         Who is going to be in the study?

·         Why do researchers believe the experimental treatment being tested may be effective?

·         Has it been tested before?

·         What kinds of tests and experimental treatments are involved?

·         How do the possible risks, side effects, and benefits in the study compare with

·         my current treatment?

·         How might this trial affect my daily life?

·         How long will the trial last?

·         Will hospitalization be required?

·         Who will pay for the experimental treatment?

·         Will I be reimbursed for other expenses?

·         What type of long-term follow up care is part of this study?

·         How will I know that the experimental treatment is working? Will results of the trials be provided to me?

·         Who will be in charge of my care?

2. Does participating in a clinical trial mean I have to change doctors? No. Being in a clinical trial should not alter your relationship with your physician, but your physician needs to be informed if you plan to participate in a clinical trial.

3. What is in it for me? This is an important question. While participating in a clinical trial may allow you to gain access to important new treatments before they are widely available, generally speaking, participating in a clinical trial means there is no guarantee of direct benefit to the participant.

4. Why participate in a clinical trial if there may be no direct benefit to me? By participating in medical research you are helping others by advancing the field. Without the help of patients, we could not move forward towards understanding and curing MG. Participants may also benefit by gaining a sense of 'control' over their disease through taking a more active role in their healthcare.

A carefully conducted clinical trial is the fastest and safest way to find treatments that work in people. I am bias being that I am a physician who runs clinical MG trials, but my, opinion is that we all must work together to find a cure. Participation in a clinical trial is an admirable, selfless gift you can give to others who will suffer with this disease in the future. Certainly, participation in clinical trials is not for everyone and by no means will the decision to participate or not alter your medical care in any way. Also, participants are free to leave the trial at any time.

Before making your decision, it is often helpful to discuss your thoughts about participation with family, friends, and clergy as will as medical professionals.