MMFP-Tableau: Enabling Precision Mitochondrial Medicine Through Integration, Visualization, and Analytics of Clinical and Research Health System Electronic Data
medrxiv(2024)
摘要
Purpose To describe a novel data integration workflow developed to automate clinical and research electronic health system data integration and harmonization from siloed sources for centralized access, visualization and analysis by clinicians and researchers in an end user-friendly customized analytic platform. Methods A centralized, semi-automated framework provides data provenance and user access to integrated data sources. Data models are implemented leveraging a centralized server (Alteryx) for high-level analytics including scheduling, integration and modeling. A secure Tableau instance hosts end-user visualizations, with minimal software development required. Results MMFP-Tableau, named for its origin in the Mitochondrial Medicine Frontier Program (MMFP) at Children’s Hospital of Philadelphia, facilitates direct access to integrated, highly robust health system datasets. This scalable data solution enables integration of clinical and research parameters with research samples; enhances external biopharma collaborations for clinical trial design, subject recruitment and data tracking; accelerates retrospective clinical cohort data analysis; and improves complex data visualization for clinicians and researchers. Conclusion MMFP-Tableau promotes complex data integration, visibility, and advanced analytic capabilities to facilitate seamless multidisciplinary research, benefitting clinical care and research in rare disease patients and cohorts. This approach represents a generalizable workflow concept readily adaptable to implement across diverse fields of medicine ### Competing Interest Statement MJF is engaged with several companies involved in mitochondrial disease therapeutic preclinical and/or clinical-stage development. MJF is co-founder and Chief Scientific Advisor of Rarefy Therapeutics, an advisory board member with equity interest in RiboNova Inc.; a scientific advisory board member and paid consultant with Khondrion and Larimar Therapeutics; has been a paid consultant for Astellas (formerly Mitobridge), Casma Therapeutics, Cyclerion Therapeutics, Epirium Bio (formerly Cardero Therapeutics), HealthCap VII Advisor AB, Imel Therapeutics, Mayflower, Inc., Primera Therapeutics, Inc., Minovia Therapeutics, Mission Therapeutics, NeuroVive Pharmaceutical AB, Reneo Therapeutics, Stealth BioTherapeutics, Vincere Bio, and Zogenix; and/or has been a sponsored research collaborator for Aadi Bioscience, Astellas, Cyclerion Therapeutics, Epirium Bio, Imel Therapeutics, Khondrion, Merck, Minovia Therapeutics, Mission Therapeutics, NeuroVive Pharmaceutical AB, PTC Therapeutics, Raptor Pharmaceuticals, REATA Inc., Reneo Therapeutics, RiboNova, Saol Therapeutics, Standigm, and Stealth BioTherapeutics. MJF also has received royalties from Elsevier and speaker fees from Agios Pharmaceuticals, GenoMind, and educational honorarium from PlatformQ. ZZC has received paid consultancy fees from Reneo Therapeutics and currently with UCB, and was a sponsored research collaborator for Imel Therapeutics, Astellas, and Khondrion. RDG has received consultancy fees from Minovia Therapeutics and Nurture Genomics. None of the other authors have relevant conflicts of interest to declare. ### Funding Statement This study was funded by The Childrens Hospital of Philadelphia (CHOP) Mitochondrial Medicine Frontier Program (M.J.F. PI). This work was funded in part by the NIH (R35-GM134863). The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH. ### Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes The details of the IRB/oversight body that provided approval or exemption for the research described are given below: All human subjects research was performed under a Children' s Hospital of Philadelphia (CHOP) Institutional Review Board approved study #08-6177 (Falk, PI). I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable. Yes Data and code files are available from corresponding author upon request.
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