June 25, 2019
Caroline Donovan, Manager of Patient Engagement at Lupus Research Alliance (LRA) affiliate Lupus Therapeutics (LT) took part in a panel discussion at the DIA 2019 (Drug Information Association) annual meeting, aimed at finding ways to make sure that diverse groups of patients can make informed choices about joining a clinical trial.
Ms. Donovan explained that involving different patient groups is a challenge that permeates the research field and has major implications for understanding how drugs work and for health outcomes. “We need diverse representation in clinical trials to ensure health equity and to find treatments that work in the populations impacted by each disease.”
Ms. Donovan spoke about why in lupus gaining diverse representation is a particular problem. “Lupus clinical trials have historically been difficult to enroll and often lack the diversity of the most affected population, African Americans.” She shared data from a 2018 study showing that while African Americans make up 43% of lupus cases, they make up only 14% of participants in randomized clinical trials. In summarizing the problem, Ms. Donovan said, “not enough people are enrolling in, and staying on clinical trials, and the people that do are not representative of the population that has lupus.”
Her presentation outlined how the LRA and LT are using many strategies to address this issue. Ms. Donovan detailed one initiative that she heads up, a pilot program called Patient Advocates for Lupus Studies, PALS for short. PALS is a peer-support program to increase participation in lupus clinical trials through increased education and availability of information about clinical trials. Coordinated by the two organizations, PALS has been developed with direction from an advisory panel made up of lupus thought leaders, pharmaceutical industry representatives and most importantly lupus patients.
We will let you know when PALS launches this summer and keep you posted on the other ways LRA and LT are trying to make sure that all people with lupus have the chance to take part in clinical studies!