Enrolling in a
clinical trial

Lupus Clinical Trials

Overview

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, which is why participation in clinical trials by those living with lupus is so essential to the development of effective treatments.

What is a Clinical Trial?

Clinical trials in the context of lupus research are scientific studies that evaluate the safety and effectiveness of new treatments for individuals with lupus. These trials are essential for developing new therapies and improving existing ones, offering hope for better management of the disease. Participants in these trials can gain access to cutting-edge treatments while contributing to the advancement of lupus research. Lupus Canada supports these efforts by highlighting the importance of clinical trials in advancing our understanding and treatment of 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. Before joining, individuals are provided with detailed information through an informed consent process, outlining the trial’s purpose, potential risks, and benefits, ensuring participants are well-informed about their involvement.

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 You Enroll

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.

Risks & Benefits

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.

Exiting the Clinical Trial

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.

8 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-the-counter 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?

Current Lupus Clinical Trials

These articles and information are available from the
Everything Lupus: Resource Hub.

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