Lupus research is a partnership between scientists and people living with lupus. While researchers have scientific expertise, they often don’t have the perspective that comes from someone living with lupus.
Enrolling In A Clinical Trial
You or someone you know with lupus may want to participate in a clinical trial. A clinical trial is a scientific study that tests the safety and effectiveness of a treatment in patients with specific medical conditions. Every clinical trial attempts to answer one or more specific research questions. To do this, each trial has eligibility requirements that determine who can participate, including parameters around age, sex, disease status, other medications being taken, etc.
You may decide to participate in a clinical trial for the personal satisfaction that comes from being part of scientific research. Participating in a clinical research trial is very much like a regular doctor’s visit, but usually involves extra time commitment and/or extra testing (for example, providing more blood or urine samples than usual).
Before enrolling in any clinical trial, you will be provided with an informed consent document, which you should read carefully. The consent form explains the purpose of the trial, the possible risks and benefits of treatment, and all the procedures involved in the trial. Your witnessed signature is required. It is important that any questions or concerns you have about the research trial are addressed to your satisfaction before you sign the consent form.
Research trials have risks and benefits. It is possible that the treatment could improve your health or quality of life, but there may be side effects, which can vary from person to person. Be sure to read about them in the consent form.
Clinical trial participants also have responsibilities, which you must understand before beginning. You need to attend all your appointments, follow instructions carefully, and take medications exactly as prescribed. All of these are vital if the information from the trial is to be valid.
Deciding to participate in a clinical trial is your decision. Even after signing the consent form, you don’t have to continue if you feel uncomfortable about it. You have the right to leave the study at any time.
Questions To Ask About A Clinical Trial
- What is the main purpose of this study?
- How will the study affect my daily life?
- Can I continue to take my usual prescription or over-thecounter medications?
- How many office visits are required and how long does each take?
- What kind of medication is involved and is there a chance I will get a placebo (a product with no active medicinal ingredients) instead?
- What type of procedures are involved (e.g., blood tests, x-rays)?
- What are the possible benefits?
- What are the possible risks and side effects?
Clinical research isn’t the only way to get involved and make a difference. Learn about other ways to get involved, such as events, advocacy, fundraising, volunteering and donating.