Journal article
Lupus spectrum ambiguity has long-term negative implications for patients
Lupus science & medicine, v 10(1), e000856
01 Jan 2023
PMID: 37534513
Featured in Collection : UN Sustainable Development Goals @ Drexel
Abstract
Lupus is a complex disease that is often difficult to diagnose. Risks of diagnostic delays include non-specific signs and symptoms that mimic other diseases and a lack of diagnostic criteria and referral pathways for non-specialists. To address these issues, we convened a series of virtual meetings with members of our Addressing Lupus Pillars for Health Advancement clinical care team. Meeting participants included lupus physicians, treatment developers from biotechnology, patient advocacy group representatives from the Lupus Foundation of America and advocacy/government consultants. Causes and consequences of ambiguity in diagnosis and diagnostic delays were evaluated through historical, experiential and evidence-based accounts (survey data, literature reviews and patient testimonials). Discussions highlighted the need for a clearer understanding of the definition of lupus, the natural history of the disease and the need for advancements in biotechnology to support an accurate and timely diagnosis with the potential development of a lupus spectrum.
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Details
- Title
- Lupus spectrum ambiguity has long-term negative implications for patients
- Creators
- Ian N Bruce - University of ManchesterJoy Buie - Lupus Foundation of AmericaLauren Bloch - Health Policy and Regulatory Affairs, Faegre Drinker Biddle and Reath, Washington, District of Columbia, USASang-Cheol Bae - Hanyang University Seoul HospitalKaren Costenbader - Brigham and Women's HospitalRoger A Levy - GlaxoSmithKlineVictoria P Werth - University of PennsylvaniaAshley Marion - Lupus Foundation of AmericaSanjyot Sangodkar - Harbage ConsultingSusan Manzi - Allegheny Health Network
- Publication Details
- Lupus science & medicine, v 10(1), e000856
- Publisher
- Lupus Foundation of America
- Grant note
- EMD Serono Research & Development Institute, Inc GlaxoSmithKline (http://dx.doi.org/10.13039/100004330) lupus and allied diseases AstraZeneca (http://dx.doi.org/10.13039/100004325)
- Resource Type
- Journal article
- Language
- English
- Academic Unit
- General Internal Medicine
- Web of Science ID
- WOS:000917185700002
- Scopus ID
- 2-s2.0-85167456934
- Other Identifier
- 991021934013804721
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- Collaboration types
- Industry collaboration
- Domestic collaboration
- International collaboration
- Web of Science research areas
- Rheumatology