The Lupus Research Alliance, in partnership with the National Minority Quality Forum (NMQF), has released actionable recommendations to improve diversity in participation for lupus clinical trials.
In a report titled ‘Addressing the Challenges of Clinical Research Participation Among Populations Disproportionately Impacted by Lupus’, the partners outlined the recommendations along with findings.
Lupus Research and the NMQF formed the Lupus Multi-Cultural Engagement Partnership (Lupus MCEP) in 2017 to identify the challenges and potential solutions for trial participation.
Among other factors, the partners considered the data that revealed different drug responses in people of different races and ethnicities, indicating the need for diverse participants.
The new report includes ideas on informing particularly underserved patients about trials and overcoming potential barriers to participation.
In addition, the project is intended to improve alliances among standard members of the lupus community.
Lupus Research Alliance president and CEO Kenneth Farber said: “Overcoming the many challenges to increasing diverse participation in clinical trials cannot be accomplished by just one or two organisations.
“Clinical research that generates statistically significant results for all population groups affected by lupus is critical not only for these patients but also to ensure the integrity and relevance of academic research.
“We hope this report serves as a call to action for individuals as well as organisations to do what they can to implement the recommendations presented.”
The partners are currently working on multiple initiatives focused on diverse participation.
A data resource called Lupus Index is being developed to help identify where lupus patients are receiving treatment in order to better target outreach and education among patients and healthcare providers.
Lupus Research also creased a Lupus Community Education Toolkit in alliance with the NMQF and support of Mallinckrodt Pharmaceuticals.
The toolkit provides turnkey materials that can be used by healthcare professionals and lay persons to conduct lupus community awareness education.