{
  "abstract": "Background\n\nHarmonized international registries are essential for collecting diverse, real-world data to understand and inform how evolving practice impacts disease outcomes, particularly in a rapidly changing treatment landscape, such as with alopecia areata (AA). The Global Registry of Alopecia areata disease Severity and treatment Safety (GRASS) was established following a multi-stakeholder, international, consensus exercise to establish an AA-specific dataset. Extending work conducted by an international atopic dermatitis registry network aimed to reduce data heterogeneity across country and disease borders, to optimize comparative outcome potential benefits, reduce input fatigue and resource utilization that derives from superfluity that reduces sustainability.Methods\n\nGRASS was piloted across four countries (Ireland, Italy, Spain, and Australia) using a web-based application. Following ethics and privacy approvals, >1000 patients were recruited under an initial 354-point dataset. A subsequent comprehensive review was conducted to streamline data entry and isolate high-value research variables.Results\n\nRecruitment remained steady, but completion rates were suboptimal: 40% of patients lacked longitudinal follow-up data. Field non-completion rates were 33.7% at baseline and 52.2% at follow-up. Consequently, the dataset was rationalized into the GRASS SEED (Short Easily Enterable Dataset) protocol. This revision reduced data points by 56% (eliminating 198 of 354 fields), significantly lowering clinical enrollment burden.Conclusion\n\nThe GRASS SEED protocol provides a sustainable template to minimize administrative burden, enhance site compliance, and generate robust real-world evidence for emerging therapeutic outcomes.",
  "abstract_shown": true,
  "affiliations": [
    "National and International Skin Registries (NISR) CLG , ,",
    "Sinclair Direct , , ,",
    "Department of Dermatology, South Infirmary Victoria University Hospital , ,",
    "Department of Dermatology, Venereology and Allergology, Charité-Universitätsmedizin Berlin , ,",
    "Dermatology, Children’s Health Ireland , ,",
    "Dermatology, LTM Medical College & Hospital Sion , ,",
    "Dermatology Department, University of KwaZulu-Natal , ,",
    "Sinclair Dermatology , , ,",
    "Centre for Dermatology Research, Faculty of Biology, Medicine and Health, The University of Manchester , ,",
    "Clinical Medicine, Trinity College Dublin , ,",
    "Mersey and West Lancashire Teaching Hospitals NHS Trust , ,",
    "Department of Dermatology, Mater Misericordiae University Hospital , ,",
    "Department of Dermatology, Kyorin University School of Medicine , ,",
    "Department of Infectious Diseases and Clinical Immunology, V.N. Karazin Kharkiv National University , ,",
    "Dermatology Unit, IRCCS Azienda Ospedaliero-Universitaria di Bologna , ,",
    "Private Practitioner , ,",
    "Department of Dermatology, Medical University of Warsaw , ,",
    "Hair Disorders Unit, Dermatology Department, Ramon Y Cajal Hospital, University of Alcala, IRYCIS , ,"
  ],
  "article_type": "research article",
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  "author_total": 26,
  "authors": [
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      "name": "Lara Cutlar"
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      "name": "Blake Smith"
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      "name": "John Bourke"
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      "name": "Ulrike Blume-Peytavi"
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      "name": "Laita Bokhari"
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      "name": "Ncoza Dlova"
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      "name": "Samantha Eisman"
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        0
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      "name": "Godfrey Fletcher"
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      "name": "John Frewen"
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      "name": "Matthew Harries"
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      "name": "Alan D. Irvine"
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      "name": "Nekma Meah"
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      "name": "Ian McDonald"
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      "name": "Manabu Ohyama"
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      "name": "Yuliya Ovcharenko"
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      "name": "Francesca Pampaloni"
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  "bibtex": "https://research.draconitic.com/paper/41mc9dbq52ght.bib",
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  "doi": "10.3389/fmed.2026.1796271",
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  "published": "2026-10-14",
  "publisher": "Frontiers Media SA",
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  "title": "Global registry of alopecia areata disease severity and treatment safety: findings from an international pilot and optimization of a scalable real-world registry",
  "title_text": "Global registry of alopecia areata disease severity and treatment safety: findings from an international pilot and optimization of a scalable real-world registry",
  "type": "peer-reviewed",
  "updated_at": "2026-11-02T12:21:43Z",
  "url": "https://research.draconitic.com/paper/41mc9dbq52ght",
  "venue": "Frontiers in medicine",
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