PT  - JOURNAL ARTICLE
AU  - Karin Tse
AU  - Sanjyot Sangodkar
AU  - Lauren Bloch
AU  - Kathleen Arntsen
AU  - Sang-Cheol Bae
AU  - Ian N Bruce
AU  - Erin Connolly-Strong
AU  - Karen H Costenbader
AU  - Bradley Dickerson
AU  - Thomas Dörner
AU  - Sydney Evans
AU  - Kenneth Kalunian
AU  - Amy H Kao
AU  - Susan Manzi
AU  - Eric F Morand
AU  - Sandra C Raymond
AU  - Brad H Rovin
AU  - Laura Eve Schanberg
AU  - Joan M Von Feldt
AU  - Victoria P Werth
AU  - Angel Williams Derricott
AU  - David Zook
AU  - Timothy Franson
AU  - Kenneth Getz
AU  - Yaritza Peña
AU  - Leslie M Hanrahan
ED  - ,
TI  - The ALPHA Project: Establishing consensus and prioritisation of global community recommendations to address major challenges in lupus diagnosis, care, treatment and research
AID  - 10.1136/lupus-2020-000433
DP  - 2021 Feb 01
TA  - Lupus Science & Medicine
PG  - e000433
VI  - 8
IP  - 1
4099  - http://lupus.bmj.com/content/8/1/e000433.short
4100  - http://lupus.bmj.com/content/8/1/e000433.full
SO  - Lupus Sci Med2021 Feb 01; 8
AB  - The Addressing Lupus Pillars for Health Advancement (ALPHA) Project is a global consensus effort to identify, prioritise and address top barriers in lupus impacting diagnosis, care, treatment and research. To conduct this process, the ALPHA Project convened a multistakeholder Global Advisory Committee (GAC) of lupus experts and collected input from global audiences, including patients. In phase I, the ALPHA Project used expert interviews and a global survey of lupus experts to identify and categorise barriers into three overarching pillars: drug development, clinical care and access to care. In phase II, reported here, the GAC developed recommended actionable solutions to address these previously identified barriers through an in-person stakeholder meeting, followed by a two-round scoring process. Recommendations were assessed for feasibility, impact and timeline for implementation (FIT), where potential FIT component values were between 1 and 3 and total scores were between 3 and 9. Higher scores represented higher achievability based on the composite of the three criteria. Simplifying and standardising outcomes measures, including steroid sparing as an outcome (drug development) and defining the lupus spectrum (clinical care) ranked as the highest two priority solutions during the GAC meeting and received high FIT scores (7.67 and 7.44, respectively). Leveraging social media (access to care) received the highest FIT score across all pillars (7.86). Cross-cutting themes of many solutions include leveraging digital technology and applying specific considerations for special populations, including paediatrics. Implementing the recommendations to address key barriers to drug development, clinical care and access to care is essential to improving the quality of life of adults and children with lupus. Multistakeholder collaboration and guidance across existing efforts globally is warranted.