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)

Abstract

IMPORTANCEA 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,

Predictors of QOL in Patients with Alopecia Areata

“…Ethnicity of the patients was not included in the AA Disease Specific Program criteria, which did not require physician-provided patient samples to be representative of the population in terms of race, income, social class, or age (Anderson et al, 2008). Although the Skindex-16 AA used in this study is not one of the primary QOL measures as recommended by the Alopecia Areata Consensus of Experts (Wall et al, 2021), this instrument is being used in the baricitinib clinical trial programs and thus, we included it here to understand how the measure works in a broader clinical population.…”

Developing a minimum data set required to create a registry system for patients with vitiligo

“…Several dermatologic disease registries provide information on the long-term effects and safety of systemic therapies [ 9 , 10 ]. They also enable the collection of comprehensive data elements required to provide evidence on existing therapies and monitor the presentation of new therapies at a given time [ 11 ]. Patient registries are databases that often use an MDS to facilitate accurate analysis [ 12 ].…”

Defining patient‐centered research priorities in pediatric dermatology

“…Consensus priorities for translational dermatologic research in the United Kingdom were proposed in 2015 through clinicians and patient support group representatives, identifying 97 priority research questions 8 . Disease‐specific research priorities, such as those for atopic dermatitis, psoriasis, and alopecia areata, have since been separately proposed by involving key disease stakeholders 9–11 . Importantly, children are a unique subset of dermatology patients, and there currently is no harmonized set of domains defining which pediatric dermatology research may be the most impactful for those affected.…”

“…8 Disease-specific research priorities, such as those for atopic dermatitis, psoriasis, and alopecia areata, have since been separately proposed by involving key disease stakeholders. [9][10][11] Importantly, children are a unique subset of dermatology patients, and there currently is no harmonized set of domains defining which pediatric dermatology research may be the most impactful for those affected.…”