The 2018 fall issue of the ST Quarterly magazine will be mailed out soon. We have some interesting articles including need-to-know information on what is involved when you participate in a drug study. The following is the article that contains this information that is in the upcoming fall issue. We hope that you find this article and the rest of the magazine useful and informative.

New Treatment for Cervical Dystonia – It Starts With You

Frequently asked questions about participating in clinical research

Those of us living with cervical dystonia are fortunate to have multiple treatment options available today to help relieve the symptoms. We have people who volunteered to participate in research to thank, who believed that science could lead to a better quality of life for cervical dystonia patients.

No two people with cervical dystonia are the same and treatment requires customized combinations of medications. Research is our greatest hope for continuing to find new and better treatments – and hopefully someday a cure.

Getting involved in research is easier than you think. While it can seem intimidating, the process is designed to help and protect people who are interested in helping discover new treatments. Most people find the experience of participating in a clinical study to be very rewarding.

Read on for answers to some frequently asked questions about participating in clinical research.

Q: What is a clinical trial?

A: A clinical trial is a scientific study in which participants are assigned to one or more

investigational drugs to answer questionsabout the treatment to see if it works,works better than other treatments, and has side effects.

Q: What is an investigational drug?

A: An investigational drug is a substance that is being tested in clinical trials. It has been approved by the FDA for testing in people but has not been approved for treatment.

Q: Why should I take part in a study?

A: Clinical trials or studies are important for medical advances. Current treatments for diseases are only available because of research study volunteers.

Q: What are the benefits of participating in a study?

A: There are many potential benefits to participating in a clinical study. A few include:

• Access to a new investigational drug not available outside the clinical trial
• Close monitoring, advice, care, and support by a research team of doctors and other healthcare professionals who understand your condition
• Playing an active role in your own healthcare and learning more about your cervical dystonia
• Making a contribution to society through medical research. Even if you don’t directly benefit from the results of the clinical trial, the information gathered can help others and adds to scientific knowledge. People who take part in clinical trials are vital to the process of improving medical care

Whatever a person’s reason for participating in clinical research, researchers will monitor their health and protect their privacy.

Q: What are the costs to take part in a study?

A: Study volunteers are not charged for taking part in a clinical research study.  They receive all study-related procedures and the investigational drug at no cost.

Q: What risks are involved if I decide to participate in a study?

A: Clinical trials are an important part of the research of new medicines. You may be able to help others with cervical dystonia in the future by enrolling in a clinical trial to test an investigational drug. There are possible risks involved with any clinical study. Your study doctor will review the risks with you, and you

will be closely monitored throughout the study.

Q: What happens if a person decides to take part in a clinical research study then later changes his or her mind?

A: People who join clinical research studies are volunteers.  They can stop at any time.

Q: How do I find a study?

A: Always talk to your doctor when considering different treatments. Ask for help identifying the neurology research clinics closest to you and the trials for which they are recruiting. The National Spasmodic Torticollis Association (NSTA) is also a great source of information and research opportunities.

Q: What else should I consider?

A: Be sure to notify your insurance provider about any changes to your treatment due to participation in a clinical trial, so this information is within your file for future claims.

We can all play an important role in improving care and treatment for people living with cervical dystonia. For additional questions about participating in research for spasmodic torticollis/cervical dystonia, contact Rachel Romansik at Rr@pmdi.org