Global Experts Lay Out Course to Address Top Barriers in Lupus
Update May 7, 2021: New Podcast
Listen to a new podcast with members of the Addressing Pillars for Health Advancement (ALPHA) project Global Advisory Committee.
In Phase II research of the Addressing Lupus Pillars for Health Advancement (ALPHA) project, a Global Advisory Committee (GAC) of lupus experts has established next steps for addressing top barriers in lupus: drug development, clinical care, and access to care.
GAC members are addressing each barrier through the following actions:
- Drug development - Update current lupus outcome measures and issuing a declarative consensus statement on steroid-sparing drugs.
- Clinical care - Lead the development of a consensus effort to define lupus. The new definition will build on current research definitions to include closely related immune-mediated inflammatory disorders, such as cutaneous variants. After establishing a consensus definition, it will be disseminated through publication and broader discussion.
- Access to care - Spearhead an effort to gain a better understanding of social determinants of health and contributors to health disparities, and investigate the unique access to care issues faced by children with lupus.
- Additional steps – Conduct an assessment of current biomarker development and data-sharing activities and identify gaps. The assessment will lead to the creation of standardized global data-sharing efforts and support international collective research collaborations.
GAC member and study author, Thomas Dörner, MD, Rheumatology and Clinical Immunology, Charité University Hospitals Berlin, notes, “The ALPHA project is a unique initiative to globally improve lupus treatment by bringing all stakeholders together under the leadership of the Lupus Foundation of America(LFA). And most importantly, the project takes into account patient expectations.”
In Phase II of the project, the GAC defined success states by barrier (drug development, clinical care, access to care) and validated these themes reflect patients’ perspectives through surveying of more than 3,200 persons with lupus and caregivers across 83 countries. This work builds on Phase I research and insights captured through the LFA partnership with the project. In Phase III of the ALPHA project, the GAC will establish a task force to develop and implement chosen solutions
The ALPHA project is a unique global consensus initiative that seeks to identify and prioritize the fundamental barriers or knowledge gaps that will allow providers, researchers and scientists to improve diagnosis, treatment and systems of care for people with lupus. Learn more about the ALPHA project.