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Wall D, Alhusayen R, Arents B, et al. Learning from disease registries during a pandemic: Moving toward an international federation of patient registries. Clin Dermatol. 2021;39(3):467-478doi: 10.1016/j.clindermatol.2021.01.018.
Wall, D., Alhusayen, R., Arents, B., Apfelbacher, C., Balogh, E. A., Bokhari, L., Bloem, M., Bosma, A. L., Burton, T., Castelo-Soccio, L., Fagan, N., Feldman, S. R., Fletcher, G., Flohr, C., Freeman, E., French, L. E., Griffiths, C. E. M., Hruza, G. J., Ingram, J. R., Kappelman, M. D., Lara-Corrales, I., Lim, H. W., Meah, N., McMahon, D. E., Mahil, S. K., McNicoll, I., Musters, A., Naik, H. B., Sinclair, R., Smith, C. H., Spuls, P., Tobin, D. J., York, K., & Irvine, A. D. (2021). Learning from disease registries during a pandemic: Moving toward an international federation of patient registries. Clinics in dermatology, 39(3), 467-478. https://doi.org/10.1016/j.clindermatol.2021.01.018
Wall, Dmitri, et al. "Learning from disease registries during a pandemic: Moving toward an international federation of patient registries." Clinics in dermatology vol. 39,3 (2021): 467-478. doi: https://doi.org/10.1016/j.clindermatol.2021.01.018
Wall D, Alhusayen R, Arents B, Apfelbacher C, Balogh EA, Bokhari L, Bloem M, Bosma AL, Burton T, Castelo-Soccio L, Fagan N, Feldman SR, Fletcher G, Flohr C, Freeman E, French LE, Griffiths CEM, Hruza GJ, Ingram JR, Kappelman MD, Lara-Corrales I, Lim HW, Meah N, McMahon DE, Mahil SK, McNicoll I, Musters A, Naik HB, Sinclair R, Smith CH, Spuls P, Tobin DJ, York K, Irvine AD. Learning from disease registries during a pandemic: Moving toward an international federation of patient registries. Clin Dermatol. 2021 May-Jun;39(3):467-478. doi: 10.1016/j.clindermatol.2021.01.018. Epub 2021 Apr 06. PMID: 34518006; PMCID: PMC8432911.
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Clin Dermatol. 2021 May-Jun;39(3):467-478. doi: 10.1016/j.clindermatol.2021.01.018. Epub 2021 Apr 06.

Learning from disease registries during a pandemic: Moving toward an international federation of patient registries.

Clinics in dermatology

Dmitri Wall, Raed Alhusayen, Bernd Arents, Christian Apfelbacher, Esther A Balogh, Laita Bokhari, Manja Bloem, Angela L Bosma, Tim Burton, Leslie Castelo-Soccio, Nicole Fagan, Steven R Feldman, Godfrey Fletcher, Carsten Flohr, Esther Freeman, Lars E French, Christopher E M Griffiths, George J Hruza, John R Ingram, Michael D Kappelman, Irene Lara-Corrales, Henry W Lim, Nekma Meah, Devon E McMahon, Satveer K Mahil, Ian McNicoll, Annelie Musters, Haley B Naik, Rodney Sinclair, Catherine H Smith, Phyllis Spuls, Desmond J Tobin, Katherine York, Alan D Irvine

Affiliations

  1. Hair Restoration Blackrock, Dublin, Ireland; National and International Skin Registry Solutions (NISR), Charles Institute of Dermatology, University College Dublin, Dublin, Ireland; School of Medicine, University College Dublin, Dublin, Ireland. Electronic address: [email protected].
  2. Division of Dermatology and Sunnybrook Research Institute, University of Toronto, Ontario, Canada.
  3. Dutch Association for People with Atopic Dermatitis, Nijkerk, the Netherlands.
  4. Institute of Social Medicine and Health Systems Research, Medical Faculty, Otto von Guericke University Magdeburg, Magdeburg, Germany; Family Medicine and Primary Care, Lee Kong Chian School of Medicine, Nanyang Technological University, Singapore.
  5. Center for Dermatology Research, Department of Dermatology, Wake Forest School of Medicine, Winston Salem, North Carolina, USA.
  6. Sinclair Dermatology, Melbourne, Australia.
  7. Department of Dermatology, Academic Medical Center, University of Amsterdam, Amsterdam Public Health, Infection and Immunity, Amsterdam, The Netherlands.
  8. Independent patient representative.
  9. Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA; University of Pennsylvania School of Medicine, Philadelphia, Pennsylvania, USA.
  10. University of Dublin, Trinity College, Dublin, Ireland.
  11. National and International Skin Registry Solutions (NISR), Charles Institute of Dermatology, University College Dublin, Dublin, Ireland.
  12. Unit for Population-Based Dermatology Research, St John's Institute of Dermatology, Guy's and St Thomas' NHS Foundation Trust and King's College London, London, UK.
  13. Massachusetts General Hospital Department of Dermatology, Harvard Medical School, Boston, Massachusetts, USA.
  14. Department of Dermatology, University Hospital, Munich University of Ludwig Maximilian, Munich, Germany.
  15. Dermatology Centre, The University of Manchester and NIHR Manchester Biomedical Research Centre, Manchester, UK.
  16. St. Louis University Department of Dermatology, St. Louis, Missouri, USA.
  17. Department of Dermatology, Division of Infection & Immunity, Cardiff University, Cardiff, UK.
  18. Department of Pediatrics, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA.
  19. Section of Dermatology, Hospital for Sick Children, Toronto, Ontario, Canada.
  20. Department of Dermatology, Henry Ford Health System, Detroit, Michigan, USA.
  21. St John's Institute of Dermatology, Guy's and St Thomas' NHS Foundation Trust and King's College London, London, UK.
  22. Centre for Health Informatics and Multiprofessional Education (CHIME), University College London, London, UK.
  23. Department of Dermatology, University of California, San Francisco, San Francisco, California, USA.
  24. The Charles Institute of Dermatology, School of Medicine, University College Dublin, Belfield, Dublin, Ireland.
  25. Netcare Greenacres Hospital, Port Elizabeth, South Africa.
  26. National and International Skin Registry Solutions (NISR), Charles Institute of Dermatology, University College Dublin, Dublin, Ireland; Clinical Medicine, Trinity College, Dublin, Ireland.

PMID: 34518006 PMCID: PMC8432911 DOI: 10.1016/j.clindermatol.2021.01.018

Abstract

High-quality dermatology patient registries often require considerable time to develop and produce meaningful data. Development time is influenced by registry complexity and regulatory hurdles that vary significantly nationally and institutionally. The rapid emergence of the coronavirus disease 2019 (COVID-19) global pandemic has challenged health services in an unprecedented manner. Mobilization of the dermatology community in response has included rapid development and deployment of multiple, partially harmonized, international patient registries, reinventing established patient registry timelines. Partnership with patient organizations has demonstrated the critical nature of inclusive patient involvement. This global effort has demonstrated the value, capacity, and necessity for the dermatology community to adopt a more cohesive approach to patient registry development and data sharing that can lead to myriad benefits. These include improved utilization of limited resources, increased data interoperability, improved ability to rapidly collect meaningful data, and shortened response times to generate real-world evidence. We call on the global dermatology community to support the development of an international federation of patient registries to consolidate and operationalize the lessons learned during this pandemic. This will provide an enduring means of applying this knowledge to the maintenance and development of sustainable, coherent, and impactful patient registries of benefit now and in the future.

Copyright © 2021. Published by Elsevier Inc.

Conflict of interest statement

Conflict of interest C.F. is Chief Investigator of the UK-Irish Atopic eczema Systemic TherApy Register (A-STAR). C.F., A.I., and P.S. co-lead the SECURE-AD register, which studies the impact of COVID

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