Jul. 01, 2016

Your Voice Matters. Four Ways You Can Improve Lupus Research

Your Voice Matters. Four Ways You Can Improve Lupus Research

By Anita Roach, MS, Lupus Foundation of America Research Program Manager

While researchers have high scientific knowledge, they do not have the experiential knowledge (know-how that can only be gained through experience) that comes with being a person with lupus or their caregiver. People with lupus may not have the expertise to carry out certain research activities, such as develop a disease activity tool. However, their role as experts on their lupus and its impact on daily life can enable research teams to ask the right questions when designing and evaluating such tools. Each role is essential for research to succeed. 
I observed this first-hand at a recent scientific meeting held by the Childhood Arthritis and Rheumatology Research Alliance (CARRA) I attended in Toronto. The meeting included families of children and teens with lupus and other childhood rheumatic diseases (like juvenile idiopathic arthritis and juvenile myositis) as well as dedicated doctors who treat and conduct research on these conditions.
I participated in the meeting alongside parents affected by childhood lupus. Together, we attended sessions where we discussed research projects in areas such as lupus nephritis (kidney inflammation), mental health, transition, and cutaneous (skin) lupus. In these sessions, parents were actively involved in addressing the most pressing scientific questions in childhood lupus research, setting short- and long-term research plans, and providing their perspectives as caregivers.    
Engaging people who are directly affected by lupus and other diseases is essential for research to be successful and meaningful.  Their involvement better enables the patient and broader healthcare community to put important research findings into practice.
Interested in participating in lupus research? Here are four ways to get started.


1. Share your perspective—By speaking to your experience in research surveys, interviews, and focus groups, you can help shape and advance lupus research. Open interviews and focus groups allow participants to give their point of view in a more in-depth manner.   


2. Join a registry—A registry is a collection of information about individuals, often with a specific condition. By providing your information in a lupus registry, you can help research teams better understand the factors that contribute to the development and progression of lupus. These registries often follow strict protocols (plans) as well as state and federal laws to secure your health information and protect your identity from anyone you have not consented to have it.  Registries can also be used to find individuals who may be eligible to volunteer in clinical research, such as our Lupus Research Registry


3. Participate in clinical trialsClinical trials are used to expand medical knowledge.  By participating, you are enabling research teams to evaluate the safety and effectiveness of diagnostic tools, procedures and therapies. These are investigational studies. Other clinical trials called observational studies look at individuals over time without attempting to intervene in their outcomes.  Clinical research must follow strict protocols to protect participants as well as federal laws regulated by the Food and Drug Administration (FDA). Learn more about participating in clinical research by visiting our Center for Clinical Trials Education


4. Become a partner in research—The Lupus Foundation of America is a member of PARTNERS, one of 20 patient-powered research networks funded by PCORI. In PARTNERS, children, teens and their families are directly involved in making decisions about research priorities and designing research studies on pediatric lupus and other juvenile rheumatic diseases. They provide their input in every stage of research and, in some cases, conduct research.  Learn more about upcoming opportunities to get involved in PARTNERS. 


Participating in research can seem daunting, especially when you are juggling lupus and everyday life. However, patient and caregiver participation can be a rewarding experience and is essential to improve the quality of life of people with lupus. If you are interested, it may be best to commit to a short-term project first, and then build to longer-term research activities. Either way, be sure to choose research areas that are most important to you. And remember: you are a valued expert at this table!