Dataset Information

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.

SUBMITTER: Wall D

PROVIDER: S-EPMC8432911 | biostudies-literature | 2021 May-Jun

REPOSITORIES: biostudies-literature

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

Wall Dmitri D Alhusayen Raed R Arents Bernd B Apfelbacher Christian C Balogh Esther A EA Bokhari Laita L Bloem Manja M Bosma Angela L AL Burton Tim T Castelo-Soccio Leslie L Fagan Nicole N Feldman Steven R SR Fletcher Godfrey G Flohr Carsten C Freeman Esther E French Lars E LE Griffiths Christopher E M CEM Hruza George J GJ Ingram John R JR Kappelman Michael D MD Lara-Corrales Irene I Lim Henry W HW Meah Nekma N McMahon Devon E DE Mahil Satveer K SK McNicoll Ian I Musters Annelie A Naik Haley B HB Sinclair Rodney R Smith Catherine H CH Spuls Phyllis P Tobin Desmond J DJ York Katherine K Irvine Alan D AD

Clinics in dermatology 20210406 3

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, ...[more]

PMID: 34518006

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Project description:Testing hundreds of thousands of DNA markers in human, mouse, and other species for association to complex traits like disease is now a reality. However, information on how variations in DNA impact complex physiologic processes flows through transcriptional and other molecular networks. In other words, DNA variations impact complex diseases through the perturbations they cause to transcriptional and other biological networks, and these molecular phenotypes are intermediate to clinically defined disease. Because it is also now possible to monitor transcript levels in a comprehensive fashion, integrating DNA variation, transcription, and phenotypic data has the potential to enhance identification of the associations between DNA variation and diseases like obesity and diabetes, as well as characterize those parts of the molecular networks that drive these diseases. Toward that end, we review methods for integrating expression quantitative trait loci (eQTLs), gene expression, and clinical data to infer causal relationships among gene expression traits and between expression and clinical traits. We further describe methods to integrate these data in a more comprehensive manner by constructing coexpression gene networks that leverage pairwise gene interaction data to represent more general relationships. To infer gene networks that capture causal information, we describe a Bayesian algorithm that further integrates eQTLs, expression, and clinical phenotype data to reconstruct whole-gene networks capable of representing causal relationships among genes and traits in the network. These emerging network approaches, aimed at processing high-dimensional biological data by integrating data from multiple sources, represent some of the first steps in statistical genetics to identify multiple genetic perturbations that alter the states of molecular networks and that in turn push systems into disease states. Evolving statistical procedures that operate on networks will be critical to extracting information related to complex phenotypes like disease, as research goes beyond a single-gene focus. The early successes achieved with the methods described herein suggest that these more integrative genomics approaches to dissecting disease traits will significantly enhance the identification of key drivers of disease beyond what could be achieved by genetic association studies alone.

Dataset Information

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

Publications

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

Similar Datasets

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