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)

Dmitri Wall; Nekma Meah; Katherine York; Bevin Bhoyrul; Laita Bokhari; Leonardo Spagnol Abraham; Roisín Adams; Wilma Bergfeld; Regina C Betz; Ulrike Blume-Peytavi; Valerie Callender; Chel Campbell; Jen Chambers; Gang Chen; Vijaya Chitreddy; George Cotsarelis; Brittany Craiglow; Rachita Dhurat; Ncoza Dlova; Jeff Donovan; Bruna Duque-Estrada; Samantha Eisman; Abby Ellison; Paul Farrant; Juan Ferrando Barberá; Aida Gadzhigoroeva; Ramon Grimalt; Matthew Harries; Maria Hordinsky; Alan D Irvine; Victoria Jolliffe; Leslie Jones; Brett King; Won-Soo Lee; Nino Lortkipanidze; Amy McMichael; Andrew Messenger; Paradi Mirmirani; Elise Olsen; Seth J Orlow; Yuliya Ovcharenko; Bianca Maria Piraccini; Rodrigo Pirmez; Adriana Rakowska; Pascal Reygagne; Melissa Riley; Lidia Rudnicka; David Saceda Corralo; Jerry Shapiro; Pooja Sharma; Tatiana Silyuk; Spartak Kaiumov; Desmond J Tobin; Antonella Tosti; Sergio Vañó-Galván; Annika Vogt; Martin Wade; Leona Yip; Abraham Zlotogorski; Cheng Zhou; Rodney Sinclair

doi:10.1001/jamadermatol.2020.5839

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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)

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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)

Dmitri Wall, Nekma Meah, Katherine York, Bevin Bhoyrul, Laita Bokhari, Leonardo Spagnol Abraham, Roisín Adams, Wilma Bergfeld, Regina C Betz, Ulrike Blume-Peytavi, …

JAMA dermatology (Chicago, Ill.), Vol.157(4), pp.1-448

2021-04-01

DOI: https://doi.org/10.1001/jamadermatol.2020.5839

PMID: 33656556

Abstract

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. To generate core domains and domain items for a global network of alopecia areata patient registries. 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. 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. 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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Collaboration types: Domestic collaboration; International collaboration
Citation topics: 1 Clinical & Life Sciences; 1.158 Dermatology - General; 1.158.1254 Alopecia Areata
Web Of Science research areas: Dermatology
ESI research areas: Clinical Medicine

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Title: 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)
Creators: Dmitri Wall - Sinclair Dermatology, Melbourne, Australia
Nekma Meah - Sinclair Dermatology, Melbourne, Australia
Katherine York - Netcare Greenacres Hospital, Port Elizabeth, South Africa
Bevin Bhoyrul - Sinclair Dermatology, Melbourne, Australia
Laita Bokhari - Sinclair Dermatology, Melbourne, Australia
Leonardo Spagnol Abraham - Department of Dermatology, Hospital Regional da Asa Norte, Brasilia, Brazil
Roisín Adams - National Centre for Pharmacoeconomics, St James Hospital, Dublin, Ireland
Wilma Bergfeld - Cleveland Clinic Main Campus, Cleveland, Ohio
Regina C Betz - Institute of Human Genetics, University of Bonn, School of Medicine and University Hospital Bonn, Bonn, Germany
Ulrike Blume-Peytavi - Department of Dermatology, Venerology and Allergology, Clinical Research Center for Hair and Skin Science, Charité-Universitaetsmedizin Berlin, Berlin, Germany
Valerie Callender - Callender Dermatology and Cosmetic Center, Glenn Dale, Maryland
Chel Campbell - Australia Alopecia Areata Foundation Inc, Frankston, Australia
Jen Chambers - Alopecia UK, Shipley, United Kingdom
Gang Chen - Centre for Health Economics, Monash University, Melbourne, Australia
Vijaya Chitreddy - Sinclair Dermatology, Melbourne, Australia
George Cotsarelis - Department of Dermatology, Perelman School of Medicine at the University of Pennsylvania, Philadelphia
Brittany Craiglow - Department of Dermatology, Yale University, New Haven, Connecticut
Rachita Dhurat - Department of Dermatology, LTM Medical College and Hospital Sion, Mumbai, India
Ncoza Dlova - School of Clinical Medicine, University of KwaZulu Natal, Durban, South Africa
Jeff Donovan - Donovan Hair Clinic, Whistler, British Columbia, Canada
Bruna Duque-Estrada - Instituto de Dermatologia Prof Rubem David Azulay, Rio de Janeiro, Brazil
Samantha Eisman - Sinclair Dermatology, Melbourne, Australia
Abby Ellison - National Alopecia Areata Foundation, San Rafael, California
Paul Farrant - Brighton and Sussex University Hospitals NHS (National Health Service) Trust, Brighton, United Kingdom
Juan Ferrando Barberá - Instituto Clínic de Medicina y Dermatología, Hospital Clínic de Barcelona, University of Barcelona, Barcelona, Spain
Aida Gadzhigoroeva - Scientific and Practical Center Dermatolovenereology and Cosmetology of the Moscow City Health Department, Moscow, Russian Federation
Ramon Grimalt - Facultat de Medicina i Ciències de la Salut, Universitat Internacional de Catalunya, Barcelona, Spain
Matthew Harries - The Dermatology Centre, Salford Royal NHS Foundation Trust, Salford, Manchester, United Kingdom
Maria Hordinsky - Department of Dermatology, University of Minnesota, Minneapolis
Alan D Irvine - Clinical Medicine, Trinity College Dublin, Dublin, Ireland
Victoria Jolliffe - Centre for Cell Biology and Cutaneous Research, Blizard Institute, London, United Kingdom
Leslie Jones - Sinclair Dermatology, Melbourne, Australia
Brett King - Yale School of Medicine, New Haven, Connecticut
Won-Soo Lee - Department of Dermatology, Yonsei Wonju University, Wonju, Korea
Nino Lortkipanidze - Department of Dermatology and Venereology, David Tvildiani Medical University, Tbilisi, Republic of Georgia
Amy McMichael - Department of Dermatology, Wake Forest University School of Medicine, Winston-Salem, North Carolina
Andrew Messenger - Department of Infection, Immunity and Cardiovascular Disease, University of Sheffield, Sheffield, United Kingdom
Paradi Mirmirani - Department of Dermatology, Kaiser Permanente Vallejo, Vallejo, California
Elise Olsen - Duke Dermatology Clinic, Durham, North Carolina
Seth J Orlow - Department of Pediatrics, New York University Medical Center, New York, New York
Yuliya Ovcharenko - Department of General and Clinical Immunology and Allergology, V. N. Karazin Kharkiv National University, Kharkiv, Ukraine
Bianca Maria Piraccini - Department of Experimental, Diagnostic and Specialty Medicine, Alma Mater Studiorum University of Bologna, Bologna, Italy
Rodrigo Pirmez - Instituto de Dermatologia Professor Rubem David Azulay, Santa Casa da Misericórdia do Rio de Janeiro, Rio de Janeiro, Brazil
Adriana Rakowska - Department of Dermatology, Medical University of Warsaw, Warsaw, Poland
Pascal Reygagne - Centre de Santé Sabouraud, Hopital Saint Louis, Vellefaux, Paris, France
Melissa Riley - Canadian Alopecia Areata Foundation, King City, Ontario, Canada
Lidia Rudnicka - Department of Dermatology, Medical University of Warsaw, Warsaw, Poland
David Saceda Corralo - Dermatology Department, Hospital Universitario Ramón y Cajal, Instituto Ramón y Cajal de Investigación Sanitaria, Universidad de Alcalá, Madrid, Spain
Jerry Shapiro - Disorders of the Hair and Scalp, The Ronald O. Perelman Department of Dermatology, New York University School of Medicine, New York, New York
Pooja Sharma - Sinclair Dermatology, Melbourne, Australia
Tatiana Silyuk - Hair Treatment and Transplantation Center, Saint Petersburg, Russian Federation
Spartak Kaiumov - Nautilus Clinic and Education Centre, St Petersburg, Russia
Desmond J Tobin - The Charles Institute of Dermatology, School of Medicine, University College Dublin, Belfield, Dublin, Ireland
Antonella Tosti - Dr Phillip Frost Department of Dermatology and Cutaneous Surgery, University of Miami, Miller School of Medicine, Miami, Florida
Sergio Vañó-Galván - Trichology Unit, #TricoHRC Research Group, Madrid, Spain
Annika Vogt - Department of Dermatology, Venerology and Allergology, Clinical Research Center for Hair and Skin Science, Charité-Universitaetsmedizin Berlin, Berlin, Germany
Martin Wade - The London Skin and Hair Clinic, London, United Kingdom
Leona Yip - Skin Partners Specialist Dermatologists, Brisbane, Australia
Abraham Zlotogorski - Department of Dermatology, Hadassah-Hebrew University Medical Center, Jerusalem, Israel
Cheng Zhou - Department of Dermatology, Peking University People's Hospital, Beijing, China
Rodney Sinclair - Sinclair Dermatology, Melbourne, Australia
Publication Details: JAMA dermatology (Chicago, Ill.), Vol.157(4), pp.1-448
Publisher: United States
Academic Unit: Miller School of Medicine; UMMG Dept of Dermatology & Cutaneous Surgery
Language: English
Resource Type: Journal article
PMID: 33656556
Record Identifier: 991031577035502976