Shots:
- Research into Lupus has yielded groundbreaking results in pharmacokinetics and pharmacodynamics, yet experts still don’t understand its cause
- Lupus Research Alliance (LRA) recently launched a platform called Data Repository, Exchange, and Analytics (DREAM) for data sharing and partnerships for research in lupus
- Devon Kelly, Director of Lupus Nexus at the Lupus Research Alliance, sheds light on the DREAM platform and the importance of diversity in clinical research on lupus
Interview with Devon Kelly, MS, CPPM, Director, Lupus Nexus at the Lupus Research Alliance
Saurabh: Could you give us some insights on the DREAM platform? How does DREAM fit into your Lupus Nexus program?
Devon: The DREAM is one of the components of Lupus Nexus (LNx) developed by the Lupus Research Alliance. Specifically, it offers researchers: 1) access to all LNx data; 2) opportunity to request biological samples for analysis; 3) repository for the raw data from analyzed samples; 4) ability to link to other, non-LNx data sets; and 5) various tools to analyze data.
Saurabh: What benefits does DREAM offer to the researchers and people living with Lupus?
Devon: The DREAM is unique to the lupus community- there is no other resource that allows digital access to the breadth and depth of medical data, research data, patient-reported information and biospecimens as does the DREAM. Specifically, the raw data of all analyses of biological samples will be deposited into the DREAM, amassing an unprecedented longitudinal data set.
For people living with lupus, the DREAM will serve as digital space to access educational content, connect to a broader patient community, and receive alerts to participate in lupus research opportunities. Participants in the Lupus Landmark Study (LLS) will also be able to access their research results through the DREAM.
Saurabh: What advancement is LRA targeting through Lupus Nexus in Lupus research?
Devon: The cause of lupus is not well understood, but research has shown that genetic, environmental, hormonal, and immunological factors all play a role. Not fully understanding the causes of lupus, how it develops, and how individuals with lupus respond or don’t respond to treatment hinders our ability to develop personalized treatments. The Lupus Nexus is designed to address key emerging research/clinical questions in lupus as well as the following long-standing ones: elucidating genetic drivers and antigenic targets of lupus, identifying phenotypic and mechanistic heterogeneity, and correlating mechanistic drivers with disease severity and therapeutic responses.
Saurabh: How important is diversity in clinical research on lupus? How do you plan to target it through your platform?
Devon: Diversity in lupus research is key- people of all ages and from all walks of life are living with lupus, but it particularly affects women and is especially prevalent in racial and ethnic minority groups. The Lupus Nexus was specifically designed with this in mind, reviewing and focusing recruitment efforts for race, gender and ethnicities that reflect the individuals affected by lupus.
Saurabh: How does Lupus Nexus align with LRA’s five-year plan? Is there a possibility of the addition of more features or platforms in the future to advance your goal?
Devon: The concept of the Lupus Nexus was born as part of the Lupus Research Alliance 2019-2023 strategic plan. The 2024-2028 five-year plan builds on this effort and includes facilitating data sharing and integration across the LRA research continuum, as well as supporting the development of molecular stratification, diagnostic and prognostic tools and biomarkers, of which the Lupus Nexus will play a key role. The LRA is consistently considering additional features to maximize our investment in this space.
Saurabh: What are the contributions from organizations like BMS, GSK, AbbVie & EMD Serono as mentioned in the press release?
Devon: Financial contributions from BMS, GSK, AbbVie and EMD Serono were used to partially fund the design and build the Lupus Nexus, with most of the financial support provided by the Lupus Research Alliance. Representatives from the companies also contributed their time and expertise to provide insights and guidance in the design and implementation of the Lupus Nexus.
Image Source: Canva
About the Author
Devon Kelly, M.S., C.P.P.M.
Devon Kelly is the Director of the Lupus Nexus, at the Lupus Research Alliance. She is accountable for the general oversight and strategic direction of the Lupus Nexus. After over 26 years in industry and academia, Devon transitioned to the nonprofit sector in 2022. Her background includes basic and translational research in a variety of therapeutic areas, as well as clinical operations and building biorepository capabilities with a focus on data management. She received her BS in Zoology from The George Washington University and her MS in Forensic Science from the University of New Haven.
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