Three ways you can improve lupus research
Sure, researchers have scientific expertise, but they do not have the know-how that comes from the experience of being a person with lupus or their caregiver. People with lupus have expertise on their disease and its impacts on daily life, which can enable research teams to ask the right questions and design the right tools.
Both researchers and patients have an essential role to play for research to succeed.
I observed this first-hand at a scientific meeting held by the Childhood Arthritis and Rheumatology Research Alliance. In attendance were families of children and teens with lupus and other childhood rheumatic diseases (including juvenile arthritis and myositis), as well as dedicated doctors who treat and conduct research on these conditions.
Together with the parents of children with lupus, I attended sessions on research projects about 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. They contributed to the development of short- and long-term research plans, and provided their unique perspectives as caregivers.
This type of engagement is essential for research to be successful and meaningful, and makes it much easier to quickly put research findings into practice.
Three ways you can get started participating in lupus research:
- Share your perspective—Taking part in surveys, interviews, or focus groups is a great way to help shape and advance lupus research. Keep an eye out for upcoming opportunities to share your perspective via PARTNERS, a patient-powered research network focused on children and teens with rheumatic diseases and their families. Follow the Lupus Foundation of America on Facebook or Twitter for announcements.
- Join a registry—A medical registry is a database of key information about individuals with a specific condition. Researchers use registries to 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. Registries can also be used to find individuals who may be eligible to volunteer for clinical research.
- Participate in clinical trials—Clinical trials can be "investigational" or "observational". Investigational trials are used to evaluate the safety and effectiveness of diagnostic tools, procedures, and therapies. Observational trials collect information from individuals over time without attempting to intervene in their outcomes. Clinical research must also follow strict protocols to protect participants as well as federal laws regulated by the Food and Drug Administration (FDA).
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!