Clinical trials are research investigations that involve volunteers.
Human participants help evaluate new drugs, medical devices, or other applications in strictly scientifically controlled settings. In the United States, clinical trials are required before a drug can receive approval from the Food and Drug Administration (FDA) and made accessible to consumers. Trials may be designed to assess the safety and efficacy of an experimental therapy, to assess whether a new treatment is better than the standard approach, or to compare the efficacy of two therapies.
Patients play an invaluable role in the process. The very nature of clinical trials dictates that these kinds of investigations would not be possible without volunteers.
Why participate in a clinical trial?
There are a number of benefits for people who choose to take part in research studies:
- The opportunity to play an active role in your healthcare. Being personally involved in your treatment is empowering.
- Participants have access to medications and/or treatments that are not otherwise available outside of the study and may not be FDA approved for several years.
- Study participants receive their study medications and/or treatments free of charge and may be reimbursed for travel expenses or paid for their time.
- Clinical trials often take place at the leading healthcare facilities in the country, and the investigators are very experienced and renowned medical specialists.
- Participants are not only helping themselves, but they are also helping others by contributing to medical research and, hopefully, making it possible for the studied treatment or medication to become FDA approved.
- Participants have the freedom to leave a research study at any time, for any reason.
How do I participate?
If you are interested in learning more about participating in a clinical trial, first consider asking your movement disorder neurologist if he/she is aware of any studies that are recruiting volunteers. Additionally, below are two websites that allow you to search for clinical trials by key words and specific disorders:
► National Institutes of Health (NIH) Clinical Trials
NIH has created a website, NIH Clinical Research Trials and You, to help people learn more about clinical trials, why they matter, and how to participate. Research has shown that some of the greatest challenges to recruitment of volunteers are the lack of general knowledge about what trials involve, where they are carried out, and who may participate. The new, centralized resource makes it easier for the public and health professionals to learn about clinical trials and how people can participate.
► Center Watch Clinical Trials
This site contains information related to clinical trials, such as a listing of more than 41,000 industry and government sponsored clinical trials as well as new drug therapies recently approved by the FDA. This site is designed for both for patients interested in participating in clinical trials and for research professionals:
The DMRF presents information on current studies in order to further scientific understanding of dystonia, but the DMRF does not endorse nor recommend participation in these or any other medical research studies. All persons should seek the advice and counsel of their physician before participating in any medical research study.
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