Journal article
Global consensus building and prioritisation of fundamental lupus challenges: the ALPHA project
Lupus science & medicine, v 6(1), e000342
01 Jan 2019
PMID: 31413854
Featured in Collection : UN Sustainable Development Goals @ Drexel
Abstract
ObjectiveLupus is a complex, heterogeneous autoimmune disease that has yet to see significant progress towards more timely diagnosis, improved treatment options for short-term and long-term outcomes, and appropriate access to care. The Addressing Lupus Pillars for Health Advancement (ALPHA) project is the first step in establishing global consensus and developing concrete strategies to address the challenges limiting progress.MethodsA Global Advisory Committee of 13 individuals guided the project and began barrier identification. Seventeen expert interviews were conducted to further characterise key barriers. Transcripts were analysed using Nvivo and a codebook was created containing a list of thematic ‘nodes’ (topics) and their descriptions. Findings were used to develop a final survey instrument that was fielded to a diverse, international stakeholder audience to achieve broad consensus.ResultsExpert interviews identified lupus heterogeneity as the primary barrier hindering advancement. Subsequent barriers were categorised into three areas: (1) Drug development. (2) Clinical care. (3) Access and value. The global survey received 127 completed responses from experts across 20 countries. Respondents identified barriers as high priority including the lack of biomarkers for clinical and drug development use, flawed clinical trial design, lack of access to clinicians familiar with lupus, and obstacles to effective management of lupus due to social determinants of care. Respondents also identified 30 autoimmune conditions that may be lupus-related based on overlapping features, shared autoantibodies and pathophysiology.ConclusionsALPHA is a comprehensive initiative to identify and prioritise the continuum of challenges facing people with lupus by engaging a global audience of lupus experts. It also explored views on lupus as a spectrum of related diseases. Conclusions from this effort provide a framework to generate actionable approaches to the identified high-priority barriers.
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Details
- Title
- Global consensus building and prioritisation of fundamental lupus challenges: the ALPHA project
- Creators
- Susan Manzi - Allegheny Health NetworkSandra Raymond - Lupus Foundation of AmericaKarin Tse - Lupus Foundation of AmericaYaritza Peña - Tufts Center for the Study of Drug Development, Boston, Massachusetts, USAAnnick Anderson - Tufts Center for the Study of Drug Development, Boston, Massachusetts, USAKathleen Arntsen - Lupus and Allied Diseases Association, Inc, Verona, New York, USASang-Cheol Bae - Hanyang University Seoul HospitalIan Bruce - University of ManchesterThomas Dörner - Charité - Universitätsmedizin BerlinKenneth Getz - Tufts Center for the Study of Drug Development, Boston, Massachusetts, USALeslie Hanrahan - Lupus Foundation of AmericaAmy Kao - Ono PharmaceuticalEric Morand - Monash Medical CentreBrad Rovin - The Ohio State University Wexner Medical CenterLaura Eve Schanberg - Duke UniversityJoan M Von Feldt - GlaxoSmithKlineVictoria P Werth - University of PennsylvaniaKaren Costenbader - Brigham and Women's Hospital
- Publication Details
- Lupus science & medicine, v 6(1), e000342
- Publisher
- British Medical Journal (BMJ)
- Resource Type
- Journal article
- Language
- English
- Academic Unit
- General Internal Medicine
- Web of Science ID
- WOS:000494644200013
- Scopus ID
- 2-s2.0-85070450629
- Other Identifier
- 991021934006304721
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- Collaboration types
- Industry collaboration
- Domestic collaboration
- International collaboration
- Web of Science research areas
- Rheumatology