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The ALPHA Project: Establishing consensus and prioritisation of global community recommendations to address major challenges in lupus diagnosis, care, treatment and research.

Publication ,  Journal Article
Tse, K; Sangodkar, S; Bloch, L; Arntsen, K; Bae, S-C; Bruce, IN; Connolly-Strong, E; Costenbader, KH; Dickerson, B; Dörner, T; Evans, S ...
Published in: Lupus Sci Med
February 2021

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.

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Published In

Lupus Sci Med

DOI

ISSN

2053-8790

Publication Date

February 2021

Volume

8

Issue

1

Location

England

Related Subject Headings

  • Surveys and Questionnaires
  • Research Report
  • Quality of Life
  • Lupus Erythematosus, Systemic
  • Humans
  • Consensus
  • Advisory Committees
  • 3204 Immunology
  • 3202 Clinical sciences
 

Citation

APA
Chicago
ICMJE
MLA
NLM
Tse, K., Sangodkar, S., Bloch, L., Arntsen, K., Bae, S.-C., Bruce, I. N., … ALPHA Project Global Advisory Committee, . (2021). The ALPHA Project: Establishing consensus and prioritisation of global community recommendations to address major challenges in lupus diagnosis, care, treatment and research. Lupus Sci Med, 8(1). https://doi.org/10.1136/lupus-2020-000433
Tse, Karin, Sanjyot Sangodkar, Lauren Bloch, Kathleen Arntsen, Sang-Cheol Bae, Ian N. Bruce, Erin Connolly-Strong, et al. “The ALPHA Project: Establishing consensus and prioritisation of global community recommendations to address major challenges in lupus diagnosis, care, treatment and research.Lupus Sci Med 8, no. 1 (February 2021). https://doi.org/10.1136/lupus-2020-000433.
Tse K, Sangodkar S, Bloch L, Arntsen K, Bae S-C, Bruce IN, Connolly-Strong E, Costenbader KH, Dickerson B, Dörner T, Evans S, Kalunian K, Kao AH, Manzi S, Morand EF, Raymond SC, Rovin BH, Schanberg LE, Von Feldt JM, Werth VP, Williams Derricott A, Zook D, Franson T, Getz K, Peña Y, Hanrahan LM, ALPHA Project Global Advisory Committee. The ALPHA Project: Establishing consensus and prioritisation of global community recommendations to address major challenges in lupus diagnosis, care, treatment and research. Lupus Sci Med. 2021 Feb;8(1).

Published In

Lupus Sci Med

DOI

ISSN

2053-8790

Publication Date

February 2021

Volume

8

Issue

1

Location

England

Related Subject Headings

  • Surveys and Questionnaires
  • Research Report
  • Quality of Life
  • Lupus Erythematosus, Systemic
  • Humans
  • Consensus
  • Advisory Committees
  • 3204 Immunology
  • 3202 Clinical sciences