International collaboration and rapid harmonization across dermatologic COVID-19 registries
Authors: Esther E. Freeman, Devon E. McMahon, George J. Hruza, Alan D. Irvine, Phyllis I. Spuls, Catherine H. Smith, Satveer K. Mahil, Leslie Castelo-Soccio, Kelly M. Cordoro, Irene Lara-Corrales, Haley B. Naik, Raed Alhusayen, John R. Ingram, Steven R. Feldman, Esther A. Balogh, Michael D. Kappelman, Dmitri Wall, Nekma Meah, Rodney Sinclair, Marie Beylot-Barry, Matthew Fitzgerald, Lars E. French, Henry W. Lim, Christopher E.M. Griffiths, Carsten Flohr
Journal: Journal of the American Academy of Dermatology (2020)

To the Editor: Across specialties, coronavirus disease-2019 (COVID-19) has ushered in an unprecedented time for international collaboration. As COVID-19 has spread around the world, there has been a movement among dermatologists to better understand the effects of the virus on their patients as well as potential dermatologic manifestations of the disease. During March and April 2020, 8 dermatologic registries focused on COVID-19 were launched worldwide to address these issues (Table I).1Freeman E.E. McMahon D.E. Fitzgerald M.E. et al.The AAD COVID-19 Registry: crowdsourcing dermatology in the age of COVID-19.J Am Acad Dermatol. 2020; 83: 509-510Abstract Full Text Full Text PDF PubMed Scopus (47) Google Scholar, 2Mahil S.K. Yiu Z.Z.N. Mason K.J. et al.Global reporting of cases of COVID-19 in psoriasis and atopic dermatitis: an opportunity to inform care during a pandemic.https://doi.org/10.1111/bjd.19161Date: 2020Date accessed: May 26, 2020Google Scholar, 3Balogh E.A. Heron C. Feldman S.R. Huang W.W. SECURE-Psoriasis: a de-identified registry of psoriasis patients diagnosed with COVID-19.J Dermatolog Treat. 2020; 31: 327Crossref PubMed Scopus (5) Google Scholar We developed a rapid consensus among registry leaders to foster collaboration and data harmonization.Table IGeneral, demographic, and medical information included in coronavirus disease 2019 (COVID-19) dermatology registriesVariablePsoProtectCOVIDSKIN French registrySECURE PsoriasisSECURE ADGlobal HS COVID-19 RegistrySECURE AlopeciaAAD/ILDS Dermatology COVID RegistryPeDRADate initiatedMarch 27, 2020March 30, 2020April 1, 2020April 1, 2020April 6, 2020April 8, 2020April 8, 2020April 20, 2020Website hosted onwww.psoprotect.orghttps://bit.ly/COVIDSKINSFDcovidpso.orgcovidderm.orghttps://hscovid.ucsf.edusecurealopecia.covidderm.orgwww.aad.org/covidregistrypedsderm.net; pedraresearch.orgServer platformREDCap∗Vanderbilt University, Nashville, Tennessee.sfdermato.orgREDCapOpenApp: Clinical Insight†OpenApp, Dublin, Ireland.REDCapOpenApp: Clinical InsightREDCapREDCapLanguages availableEnglish onlyFrench onlyEnglish onlyEnglish, Chinese, Spanish, French, RussianEnglish onlyEnglish onlyEnglish onlyEnglish onlyInclusion criteria Person entering dataHealth care professional or patientsHealth care professionalHealth care professionalHealth care professional or patientsHealth care professional or patientsHealth care professionalHealth care professionalHealth care professional COVID-19 laboratory confirmed✓✓✓✓✓✓✓✓ COVID-19 suspected✓✓…✓✓✓✓✓ Patients on systemic medication included✓✓✓✓✓✓✓✓ Patients not on systemic medication included✓✓✓✓✓✓✓✓Patient demographics Date of entry into study✓✓✓✓✓✓✓✓ Sex✓✓✓✓✓✓✓Assigned at birth✓Assigned at birth Age/year of birth✓✓✓✓✓✓✓✓ Country of residence✓✓✓✓✓✓✓✓ State of residence✓✓US only✓US/Australia✓✓US/Australia✓US only✓US States/CanadianProvinces Ethnicity✓✓US census categories✓WHO categories✓Originally US Census; changed to WHO categories 4/26/20✓WHO categories✓Originally US census; changed to WHO 4/20/20✓Currently US census categoriesGeneral medical information Height✓✓✓✓ Weight✓✓✓✓ Comorbidities (eg asthma, COPD, heart disease, DM)✓✓✓✓✓✓✓✓ Smoking status✓✓✓✓✓✓ Alcohol intake✓✓ NSAIDS✓✓✓✓Existing dermatologic condition Primary dermatologic condition✓Only psoriasis✓✓Only psoriasis✓Only AD✓✓Only alopecia✓✓ Subspecialty disease subtype✓✓ Psoriasis subtype✓Alopecia subtypes✓ Year of dermatologic diagnosis✓✓✓ Name of dermatologic medication✓✓✓Psoriasis medications only✓✓✓✓ Systemic medication:Name✓✓✓✓✓✓✓✓Dose and frequency✓✓✓✓✓Length of treatment✓✓✓✓Stopped or tapered during COVID-19 infection✓✓✓✓✓ Symptom activity at time of COVID-19 diagnosis✓✓✓✓✓✓ Associated skin disease flare with COVID-19✓✓✓✓✓✓ Skin disease severity during COVID-19 flare✓✓✓✓✓AAD, American Academy of Dermatology; AD, atopic dermatitis; COPD, chronic obstructive pulmonary disease; COVID-19, coronavirus disease 2019; DM, diabetes mellitus; HS, hidradenitis suppurativa; ILDS, International League of Dermatological Societies; NSAIDS, nonsteroidal anti-inflammatory drugs; PeDRA, Pediatric Dermatology Research Alliance; SECURE, Surveillance Epidemiology of Coronavirus (COVID 19) Under Research Exclusion; REDCap, Research Electronic Data Capture; US, United States; WHO, World Health Organization.∗ Vanderbilt University, Nashville, Tennessee.† OpenApp, Dublin, Ireland. Open table in a new tab AAD, American Academy of Dermatology; AD, atopic dermatitis; COPD, chronic obstructive pulmonary disease; COVID-19, coronavirus disease 2019; DM, diabetes mellitus; HS, hidradenitis suppurativa; ILDS, International League of Dermatological Societies; NSAIDS, nonsteroidal anti-inflammatory drugs; PeDRA, Pediatric Dermatology Research Alliance; SECURE, Surveillance Epidemiology of Coronavirus (COVID 19) Under Research Exclusion; REDCap, Research Electronic Data Capture; US, United States; WHO, World Health Organization. Members from each international registry came together in a virtual consensus meeting in April 2020, facilitated by the American Academy of Dermatology and the International League of Dermatologic Societies. Models of collaboration discussed were (1) linking data across registries for overlapping conditions at the point of data entry and (2) harmonizing data post hoc, using shared variables across registries. As a first step, each dermatologic registry provided a list of the variables they collect across several domains, including registry information, patient demographics, general medical information, prior dermatologic conditions, new-onset skin manifestations in the setting of COVID-19, and COVID-19–related history and outcomes (Supplemental Table I available via Mendeley at https://data.mendeley.com/datasets/zh6bw88xhc). This effort formed the basis for a meta-catalog containing all registry variables so that commonalities and variables in need of harmonization between studies could be easily identified (Supplemental Appendix). As a result of this harmonization process, 2 registries have, for example, changed how they collect demographics to harmonize with other international registries. Additionally, the registries now link to each other to facilitate collaboration at the time of data entry. Registry leaders also discussed challenges in collaboration, particularly double data entry across different registries.4Bauchner H. Golub R.M. Zylke J. Editorial concern–possible reporting of the same patients with COVID-19 in different reports.JAMA. 2020; 323: 1256Crossref PubMed Scopus (104) Google Scholar To address this concern, registries added a question at the point of data collection about whether a provider entered a case in another registry and to identify that registry. This additional information will enhance our ability to track double case reporting during analysis, although it is not possible to fully verify deidentified patient data. An additional limitation is that registries have, thus far, originated from North America, Europe, and Australia. Even though many of these registries are open to global submissions, most are only available in English, which may hinder participation. Active work is needed to include a broader representation of global dermatologists as well as inclusion of patients from all racial/ethnic and socioeconomic groups within each country.5Khunti K. Singh A.K. Pareek M. Hanif W. Is ethnicity linked to incidence or outcomes of COVID-19?.BMJ. 2020; 369: m1548Crossref PubMed Scopus (362) Google Scholar Ultimately, the reports generated from these registries will only be as good as the data entered. As physicians and researchers, we must strive to include diversity in these reports so that data collected are representative of the global patient community we look after. Communication and transparency in data sharing, which may take the form of regularly posted aggregate data from the registries as well as periodic update newsletters to dermatology societies internationally, may be a motivator for the dermatology community and may encourage engagement and reporting of cases. Together, we are most powerful when our collective knowledge is used to inform the management and care of our patients affected by COVID-19. The Surveillance Epidemiology of Coronavirus (COVID 19) Under Research Exclusion (SECURE)-Atopic Dermatitis (AD) Registry would like to acknowledge key support through Steering Group and patient partners Bernd Arents and Tim Burton as well as their Statistical Lead David Prieto-Merino and Steering Group members Drs Annelie H. Musters, Angela Bosma, Aaron Drucker, Kenji Kabashima, and Ching-Chi Chi. SECURE-AD and SECURE-Alopecia wish to acknowledge the support of the not-for-profit company, National and International Skin Registry solutions (NISR) in establishing and maintaining their registries. The Global Hidradenitis Suppurativa COVID-19 Registry would like to acknowledge instrumental Steering Committee members, including John W. Frew, MBBS, MMed, MSc, Sandra Guilbault, Michelle A. Lowes, MBBS, PhD, and Christine A. Yannuzzi, BA. The American Academy of Dermatology/International League of Dermatologic Societies registry would like to thank the staff of the American Academy of Dermatology and the staff of the International League of Dermatologic Societies for their support. All registries would like to thank health care providers worldwide for entering cases.