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

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

doi:10.1016/j.clindermatol.2021.01.018

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

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. KappelmanIrene 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

^*Corresponding author for this work

Dermatology

Research output: Contribution to journal › Article › peer-review

9 Citations (Scopus)

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.

Original language	English
Pages (from-to)	467-478
Number of pages	12
Journal	Clinics in Dermatology
Volume	39
Issue number	3
DOIs	https://doi.org/10.1016/j.clindermatol.2021.01.018
Publication status	Published - 1 May 2021

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10.1016/j.clindermatol.2021.01.018

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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., ... 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

@article{4788b744df1b4f828c13db80f56352ac,

title = "Learning from disease registries during a pandemic: Moving toward an international federation of patient registries",

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.",

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

note = "Funding Information: 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-19 infection episodes on atopic dermatitis. D.W. and R.S. co-lead and are members of the Steering Committee, along with L.B. N.M. D.J.T. and K.Y. of the SECURE-Alopecia registry, which studies the impact of COVID-19 infection on patients with all forms of hair loss. R.S. D.W. N.M. K.Y. and L.B. are leading the development of Global Registry of Alopecia areata disease Severity and treatment Safety (GRASS). C.F. P.S. and C.A. are members of the international TREatment of Atopic eczema Taskforce (TREAT) Executive Committee. C.E.M.G. is Chief Investigator of the British Association of Dermatologists Biologics and Immunomodulators Register (BADBIR) and an Executive Member of the PsoProtect and Psoprotectme Registries. C.H.S. is Research Chair of BADBIR, and joint Principle Investigator (PI) of PsoProtect and PsoProtectMe Registries. S.K.M. is joint Principle Investigator of PsoProtect and PsoProtectMe Registries. I.L.C. is part of the Pediatric Dermatology Research Alliance COVID-19 Response Task Force, a collaboration between the Society for Pediatric Dermatology (SPD) and the Pediatric Dermatology Research Alliance (PeDRA). B.W.M.A. is a patient representative for the SECURE-AD patient register, and the Dutch TREAT NL and BioDAY registers. P.S. is member of the PsoProtect International Scientific Advisory Board. H.B.N is a board member of the Hidradenitis Suppurativa Foundation. R.A. J.R.I. and H.B.N. are members of the Steering Committee of the Global Hidradenitis Suppurativa COVID-19 Registry. The National and International Skin Registries, a not-for-profit organization established with charitable funding from the City of Dublin Skin and Cancer Hospital, has supported our endeavors. The American Academy of Dermatology and the International League of Dermatological Societies have facilitated and provided organizational support for an international virtual consensus meeting, held in April 2020, for members of the COVID-19 dermatology registries. Publisher Copyright: {\textcopyright} 2021 Copyright: Copyright 2021 Elsevier B.V., All rights reserved.",

year = "2021",

month = may,

day = "1",

doi = "10.1016/j.clindermatol.2021.01.018",

language = "English",

volume = "39",

pages = "467--478",

journal = "Clinics in Dermatology",

issn = "0738-081X",

publisher = "Elsevier Inc.",

number = "3",

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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 2021, 'Learning from disease registries during a pandemic: Moving toward an international federation of patient registries', Clinics in Dermatology, vol. 39, no. 3, pp. 467-478. https://doi.org/10.1016/j.clindermatol.2021.01.018

TY - JOUR

T1 - Learning from disease registries during a pandemic

T2 - Moving toward an international federation of patient registries

AU - Wall, Dmitri

AU - Alhusayen, Raed

AU - Arents, Bernd

AU - Apfelbacher, Christian

AU - Balogh, Esther A.

AU - Bokhari, Laita

AU - Bloem, Manja

AU - Bosma, Angela L.

AU - Burton, Tim

AU - Castelo-Soccio, Leslie

AU - Fagan, Nicole

AU - Feldman, Steven R.

AU - Fletcher, Godfrey

AU - Flohr, Carsten

AU - Freeman, Esther

AU - French, Lars E.

AU - Griffiths, Christopher E.M.

AU - Hruza, George J.

AU - Ingram, John R.

AU - Kappelman, Michael D.

AU - Lara-Corrales, Irene

AU - Lim, Henry W.

AU - Meah, Nekma

AU - McMahon, Devon E.

AU - Mahil, Satveer K.

AU - McNicoll, Ian

AU - Musters, Annelie

AU - Naik, Haley B.

AU - Sinclair, Rodney

AU - Smith, Catherine H.

AU - Spuls, Phyllis

AU - Tobin, Desmond J.

AU - York, Katherine

AU - Irvine, Alan D.

N1 - Funding Information: 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-19 infection episodes on atopic dermatitis. D.W. and R.S. co-lead and are members of the Steering Committee, along with L.B. N.M. D.J.T. and K.Y. of the SECURE-Alopecia registry, which studies the impact of COVID-19 infection on patients with all forms of hair loss. R.S. D.W. N.M. K.Y. and L.B. are leading the development of Global Registry of Alopecia areata disease Severity and treatment Safety (GRASS). C.F. P.S. and C.A. are members of the international TREatment of Atopic eczema Taskforce (TREAT) Executive Committee. C.E.M.G. is Chief Investigator of the British Association of Dermatologists Biologics and Immunomodulators Register (BADBIR) and an Executive Member of the PsoProtect and Psoprotectme Registries. C.H.S. is Research Chair of BADBIR, and joint Principle Investigator (PI) of PsoProtect and PsoProtectMe Registries. S.K.M. is joint Principle Investigator of PsoProtect and PsoProtectMe Registries. I.L.C. is part of the Pediatric Dermatology Research Alliance COVID-19 Response Task Force, a collaboration between the Society for Pediatric Dermatology (SPD) and the Pediatric Dermatology Research Alliance (PeDRA). B.W.M.A. is a patient representative for the SECURE-AD patient register, and the Dutch TREAT NL and BioDAY registers. P.S. is member of the PsoProtect International Scientific Advisory Board. H.B.N is a board member of the Hidradenitis Suppurativa Foundation. R.A. J.R.I. and H.B.N. are members of the Steering Committee of the Global Hidradenitis Suppurativa COVID-19 Registry. The National and International Skin Registries, a not-for-profit organization established with charitable funding from the City of Dublin Skin and Cancer Hospital, has supported our endeavors. The American Academy of Dermatology and the International League of Dermatological Societies have facilitated and provided organizational support for an international virtual consensus meeting, held in April 2020, for members of the COVID-19 dermatology registries. Publisher Copyright: © 2021 Copyright: Copyright 2021 Elsevier B.V., All rights reserved.

PY - 2021/5/1

Y1 - 2021/5/1

N2 - 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.

AB - 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.

UR - http://www.scopus.com/inward/record.url?scp=85102485446&partnerID=8YFLogxK

U2 - 10.1016/j.clindermatol.2021.01.018

DO - 10.1016/j.clindermatol.2021.01.018

M3 - Article

AN - SCOPUS:85102485446

SN - 0738-081X

VL - 39

SP - 467

EP - 478

JO - Clinics in Dermatology

JF - Clinics in Dermatology

IS - 3

ER -

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

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