Hoping for Better Lupus Treatments? Consider Volunteering for a Clinical Trial
Volunteering is a great way to get involved in the lupus community. One of the best ways to volunteer is to take part in a lupus clinical trial.
Clinical trials are research studies that help medical professionals discover new and better treatments. Trials also help us learn more about a disease. Not every trial requires people to take medication or “experimental drugs.”
NYC’s First Lupus Trials Fair
This September, the Lupus Research Institute (LRI), in collaboration with the S.L.E. Lupus Foundation, hosted its first Lupus Trials Fair. Attendees had the chance to learn about about over 80 opportunities for adults and children to take part in lupus clinical studies in the NYC area. They were able to speak directly with researchers and coordinators from Columbia University Medical Center, The Feinstein Institute for Medical Research, North Shore-LIJ Health System, Hospital for Special Surgery, Montefiore Medical Center, NYU Langone Medical Center, and The Rockefeller University. Click here for a list of trials in the NYC area you might consider.
Available on our YouTube page, formal presentations by lupus experts provided great information about lupus clinical research, explaining:
- the importance of participating in lupus research
- different types of trials, including ones that do not require you to take medication
- what to expect when you participate in a lupus study
- and firsthand experience shared by a young woman with lupus who has been in a trial for three years
Some interesting facts about clinical trials and drug development I learned from the Fair:
- It takes over $1 billion and about 15 years to bring a new treatment to market.
- Clinical trials are critical to this process and require thousands of volunteers.
- 80% of trials do not have enough people enrolled to finish on time. This slows down or stops research, so new discoveries, medications, and better treatments take longer to get from the lab to the patient.
- Not all clinical trials require a person to take medication.
- Clinical trials that do test drugs, medical devices or procedures are called interventional trials.
- The ones that observe the disease over time are called observational trials. For example, they might require a blood sample.
- You do not have to have lupus to be in a lupus clinical trial. Researchers are also seeking healthy volunteers, including relatives of people with lupus.
- Patients are protected in any trial by regulations set by the U.S. Food and Drug Administration.
- You always have the option to withdraw from a study.
To learn more about getting involved in lupus trials:
- Speak with your doctor. He/she might know about studies that are seeking volunteers.
- Watch the lupus trials presentations on YouTube.
- Visit LupusTrials.org and use the search tool to find lupus trials.
- Call the site conducting a trial you might be interested in. When you look up lupus studies, each one will have contact information listed.
- Ask as many questions as you need to decide if a study might be right for you.