Global registry of alopecia areata disease severity and treatment safety: findings from an international pilot and optimization of a scalable real-world registry

@article{cutlar2026global,
  title = {{Global registry of alopecia areata disease severity and treatment safety: findings from an international pilot and optimization of a scalable real-world registry}},
  author = {Lara Cutlar and Jisha Jasmin and Blake Smith and John Bourke and Ulrike Blume-Peytavi and Laita Bokhari and Chantal Cotter and Rachita Dhurat and Ncoza Dlova and Samantha Eisman and Godfrey Fletcher and John Frewen and Matthew Harries and Alan D. Irvine and Nekma Meah and Ian McDonald and Manabu Ohyama and Yuliya Ovcharenko and Francesca Pampaloni and Bianca Maria Piraccini and Lidia Rudnicka and David Saceda-Corralo and Michela Valeria Rita Starace and Pearl Olesitse and Rodney Sinclair and Dmitri Wall},
  journal = {Frontiers in medicine},
  year = {2026},
  month = oct,
  doi = {10.3389/fmed.2026.1796271},
  url = {https://europepmc.org/article/PMC/PMC13717395},
  note = {CC BY},
}

TY  - JOUR
TI  - Global registry of alopecia areata disease severity and treatment safety: findings from an international pilot and optimization of a scalable real-world registry
AU  - Lara Cutlar
AU  - Jisha Jasmin
AU  - Blake Smith
AU  - John Bourke
AU  - Ulrike Blume-Peytavi
AU  - Laita Bokhari
AU  - Chantal Cotter
AU  - Rachita Dhurat
AU  - Ncoza Dlova
AU  - Samantha Eisman
AU  - Godfrey Fletcher
AU  - John Frewen
AU  - Matthew Harries
AU  - Alan D. Irvine
AU  - Nekma Meah
AU  - Ian McDonald
AU  - Manabu Ohyama
AU  - Yuliya Ovcharenko
AU  - Francesca Pampaloni
AU  - Bianca Maria Piraccini
AU  - Lidia Rudnicka
AU  - David Saceda-Corralo
AU  - Michela Valeria Rita Starace
AU  - Pearl Olesitse
AU  - Rodney Sinclair
AU  - Dmitri Wall
PY  - 2026
DA  - 2026/10/14
JO  - Frontiers in medicine
DO  - 10.3389/fmed.2026.1796271
UR  - https://europepmc.org/article/PMC/PMC13717395
AB  - 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.
SN  - 2296-858X
ER  -