Global registry of alopecia areata disease severity and treatment safety: findings from an international pilot and optimization of a scalable real-world registry
Year: 2026
Type: article
Study design: Observational Study
Abstract: Background: Harmonized 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: GRASS 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: Recruitment 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: The GRASS SEED protocol provides a sustainable template to minimize administrative burden, enhance site compliance, and generate robust real-world evidence for emerging therapeutic outcomes.
Source: Frontiers in Medicine
Authors: Lara Cutlar, Jisha Jasmin, Blake Smith, John Bourke, Ulrike Blume-Peytavi, Laita Bokhari, Chantal Cotter, Rachita Dhurat, Ncoza Dlova, Samantha Eisman, Godfrey Fletcher, John Frewen, Matthew Harries, Alan D. Irvine, Nekma Meah, Ian McDonald, Manabu Ohyama, Yuliya Ovcharenko, Francesca Pampaloni, Bianca Maria Piraccini, Lidia Rudnicka, David Saceda-Corralo, Michela Valeria Rita Starace, Pearl Olesitse, Rodney Sinclair, Dmitri Wall
Institutions: University College Dublin, South Infirmary Victoria University Hospital, Charité – Universitätsmedizin Berlin, Children's Health Ireland at Crumlin, Lokmanya Tilak Municipal General Hospital and Lokmanya Tilak Municipal Medical College, Hôpital de Sion, University of KwaZulu-Natal, Sinclair Dermatology, Manchester Academic Health Science Centre, University of Manchester, Salford Royal Hospital, Northern Care Alliance NHS Foundation Trust, Trinity College Dublin, Mater Misericordiae University Hospital, Kyorin University, V. N. Karazin Kharkiv National University, University of Bologna, Medical University of Warsaw, Universidad de Alcalá, Instituto Ramón y Cajal de Investigación Sanitaria, The University of Melbourne, BlackRock (United States)
Language: English
Topic: Hair Growth and Disorders
Subfield: Dermatology
Field: Medicine
Domain: Health Sciences
Open Access status: gold
Estimated APC paid: $3,801
Awards: G1483213741, G1798610363
OpenAlex ID: W7222303144