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A Global eDelphi Exercise to Identify Core Domains and Domain Items for the Development of a Global Registry of Alopecia Areata Disease Severity and Treatment Safety (GRASS).

Publication ,  Journal Article
Wall, D; Meah, N; York, K; Bhoyrul, B; Bokhari, L; Abraham, LS; Adams, R; Bergfeld, W; Betz, RC; Blume-Peytavi, U; Callender, V; Campbell, C ...
Published in: JAMA Dermatol
April 1, 2021

IMPORTANCE: A recent expert consensus exercise emphasized the importance of developing a global network of patient registries for alopecia areata to redress the paucity of comparable, real-world data regarding the effectiveness and safety of existing and emerging therapies for alopecia areata. OBJECTIVE: To generate core domains and domain items for a global network of alopecia areata patient registries. EVIDENCE REVIEW: Sixty-six participants, representing physicians, patient organizations, scientists, the pharmaceutical industry, and pharmacoeconomic experts, participated in a 3-round eDelphi process, culminating in a face-to-face meeting at the World Congress of Dermatology, Milan, Italy, June 14, 2019. FINDINGS: Ninety-two core data items, across 25 domains, achieved consensus agreement. Twenty further noncore items were retained to facilitate data harmonization in centers that wish to record them. Broad representation across multiple stakeholder groups was sought; however, the opinion of physicians was overrepresented. CONCLUSIONS AND RELEVANCE: This study identifies the domains and domain items required to develop a global network of alopecia areata registries. These domains will facilitate a standardized approach that will enable the recording of a comprehensive, comparable data set required to oversee the introduction of new therapies and harness real-world evidence from existing therapies at a time when the alopecia areata treatment paradigm is being radically and positively disrupted. Reuse of similar, existing frameworks in atopic dermatitis, produced by the Treatment of Atopic Eczema (TREAT) Registry Taskforce, increases the potential to reuse existing resources, creates opportunities for comparison of data across dermatology subspecialty disease areas, and supports the concept of data harmonization.

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Published In

JAMA Dermatol

DOI

EISSN

2168-6084

Publication Date

April 1, 2021

Volume

157

Issue

4

Start / End Page

1 / 11

Location

United States

Related Subject Headings

  • Surveys and Questionnaires
  • Severity of Illness Index
  • Registries
  • Internationality
  • Humans
  • Delphi Technique
  • Consensus
  • Alopecia Areata
  • 1112 Oncology and Carcinogenesis
  • 1103 Clinical Sciences
 

Citation

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Wall, D., Meah, N., York, K., Bhoyrul, B., Bokhari, L., Abraham, L. S., … Sinclair, R. (2021). A Global eDelphi Exercise to Identify Core Domains and Domain Items for the Development of a Global Registry of Alopecia Areata Disease Severity and Treatment Safety (GRASS). JAMA Dermatol, 157(4), 1–11. https://doi.org/10.1001/jamadermatol.2020.5839
Wall, Dmitri, Nekma Meah, Katherine York, Bevin Bhoyrul, Laita Bokhari, Leonardo Spagnol Abraham, Roisín Adams, et al. “A Global eDelphi Exercise to Identify Core Domains and Domain Items for the Development of a Global Registry of Alopecia Areata Disease Severity and Treatment Safety (GRASS).JAMA Dermatol 157, no. 4 (April 1, 2021): 1–11. https://doi.org/10.1001/jamadermatol.2020.5839.
Wall, Dmitri, et al. “A Global eDelphi Exercise to Identify Core Domains and Domain Items for the Development of a Global Registry of Alopecia Areata Disease Severity and Treatment Safety (GRASS).JAMA Dermatol, vol. 157, no. 4, Apr. 2021, pp. 1–11. Pubmed, doi:10.1001/jamadermatol.2020.5839.
Wall D, Meah N, York K, Bhoyrul B, Bokhari L, Abraham LS, Adams R, Bergfeld W, Betz RC, Blume-Peytavi U, Callender V, Campbell C, Chambers J, Chen G, Chitreddy V, Cotsarelis G, Craiglow B, Dhurat R, Dlova N, Donovan J, Duque-Estrada B, Eisman S, Ellison A, Farrant P, Barberá JF, Gadzhigoroeva A, Grimalt R, Harries M, Hordinsky M, Irvine AD, Jolliffe V, Jones L, King B, Lee W-S, Lortkipanidze N, McMichael A, Messenger A, Mirmirani P, Olsen E, Orlow SJ, Ovcharenko Y, Piraccini BM, Pirmez R, Rakowska A, Reygagne P, Riley M, Rudnicka L, Saceda Corralo D, Shapiro J, Sharma P, Silyuk T, Kaiumov S, Tobin DJ, Tosti A, Vañó-Galván S, Vogt A, Wade M, Yip L, Zlotogorski A, Zhou C, Sinclair R. A Global eDelphi Exercise to Identify Core Domains and Domain Items for the Development of a Global Registry of Alopecia Areata Disease Severity and Treatment Safety (GRASS). JAMA Dermatol. 2021 Apr 1;157(4):1–11.

Published In

JAMA Dermatol

DOI

EISSN

2168-6084

Publication Date

April 1, 2021

Volume

157

Issue

4

Start / End Page

1 / 11

Location

United States

Related Subject Headings

  • Surveys and Questionnaires
  • Severity of Illness Index
  • Registries
  • Internationality
  • Humans
  • Delphi Technique
  • Consensus
  • Alopecia Areata
  • 1112 Oncology and Carcinogenesis
  • 1103 Clinical Sciences