Evidence mapPaperPMID 34518006Full record

ArticleClinics in dermatology

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 and 24 more

Abstract read
In one paragraph

Article in Clinics in dermatology. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.

0numbers the graph read from it
0cells of the map it votes in
6citing papers in PubMed
field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

6 citing papers in PubMed.

  1. Review
  2. Article
  3. Article
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  5. Review
  6. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

34 authors.

Dmitri WallHair 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: dmitri.wall@gmail.com.
Raed AlhusayenDivision of Dermatology and Sunnybrook Research Institute, University of Toronto, Ontario, Canada.
Bernd ArentsDutch Association for People with Atopic Dermatitis, Nijkerk, the Netherlands.
Christian ApfelbacherInstitute 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.
Esther A BaloghCenter for Dermatology Research, Department of Dermatology, Wake Forest School of Medicine, Winston Salem, North Carolina, USA.
Laita BokhariSinclair Dermatology, Melbourne, Australia.
Manja BloemDepartment of Dermatology, Academic Medical Center, University of Amsterdam, Amsterdam Public Health, Infection and Immunity, Amsterdam, The Netherlands.
Angela L BosmaDepartment of Dermatology, Academic Medical Center, University of Amsterdam, Amsterdam Public Health, Infection and Immunity, Amsterdam, The Netherlands.
Tim BurtonIndependent patient representative.
Leslie Castelo-SoccioChildren's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA; University of Pennsylvania School of Medicine, Philadelphia, Pennsylvania, USA.
Nicole FaganUniversity of Dublin, Trinity College, Dublin, Ireland.
Steven R FeldmanCenter for Dermatology Research, Department of Dermatology, Wake Forest School of Medicine, Winston Salem, North Carolina, USA.
Godfrey FletcherNational and International Skin Registry Solutions (NISR), Charles Institute of Dermatology, University College Dublin, Dublin, Ireland.
Carsten FlohrUnit 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.
Esther FreemanMassachusetts General Hospital Department of Dermatology, Harvard Medical School, Boston, Massachusetts, USA.
Lars E FrenchDepartment of Dermatology, University Hospital, Munich University of Ludwig Maximilian, Munich, Germany.
Christopher E M GriffithsDermatology Centre, The University of Manchester and NIHR Manchester Biomedical Research Centre, Manchester, UK.
George J HruzaSt. Louis University Department of Dermatology, St. Louis, Missouri, USA.
John R IngramDepartment of Dermatology, Division of Infection & Immunity, Cardiff University, Cardiff, UK.
Michael D KappelmanDepartment of Pediatrics, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA.
Irene Lara-CorralesSection of Dermatology, Hospital for Sick Children, Toronto, Ontario, Canada.
Henry W LimDepartment of Dermatology, Henry Ford Health System, Detroit, Michigan, USA.
Nekma MeahSinclair Dermatology, Melbourne, Australia.
Devon E McMahonMassachusetts General Hospital Department of Dermatology, Harvard Medical School, Boston, Massachusetts, USA.
Satveer K MahilSt John's Institute of Dermatology, Guy's and St Thomas' NHS Foundation Trust and King's College London, London, UK.
Ian McNicollCentre for Health Informatics and Multiprofessional Education (CHIME), University College London, London, UK.
Annelie MustersDepartment of Dermatology, Academic Medical Center, University of Amsterdam, Amsterdam Public Health, Infection and Immunity, Amsterdam, The Netherlands.
Haley B NaikDepartment of Dermatology, University of California, San Francisco, San Francisco, California, USA.
Rodney SinclairSinclair Dermatology, Melbourne, Australia.
Catherine H SmithSt John's Institute of Dermatology, Guy's and St Thomas' NHS Foundation Trust and King's College London, London, UK.
Phyllis SpulsDepartment of Dermatology, Academic Medical Center, University of Amsterdam, Amsterdam Public Health, Infection and Immunity, Amsterdam, The Netherlands.
Desmond J TobinThe Charles Institute of Dermatology, School of Medicine, University College Dublin, Belfield, Dublin, Ireland.
Katherine YorkNetcare Greenacres Hospital, Port Elizabeth, South Africa.
Alan D IrvineNational and International Skin Registry Solutions (NISR), Charles Institute of Dermatology, University College Dublin, Dublin, Ireland; Clinical Medicine, Trinity College, Dublin, Ireland.

Funding

Medical Research Council MR/T02383X/1NIAMS NIH HHS K23 AR074531
6 · The paper itself

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.

Indexed as

COVID-19PandemicsHumansRegistriesSARS-CoV-2

Identifiers

PMID34518006
PMCPMC8432911

What Socratic holds

Textmetadata
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the Socratic graph.