REDCap and the National Mesothelioma Virtual Bank – a Scalable and Sustainable Model for Rare Disease Biorepositories

Details

• Personal Author:
  Becich MJ ; Copelli S ; Rashid R ; Silverstein JC
• Description:
  Objective: Rare disease research requires data sharing networks to power translational studies. We describe novel use of Research Electronic Data Capture (REDCap), a web application for managing clinical data, by the National Mesothelioma Virtual Bank, a federated biospecimen, and data sharing network. Materials and methods: National Mesothelioma Virtual Bank (NMVB) uses REDCap to integrate honest broker activities, enabling biospecimen and associated clinical data provisioning to investigators. A Web Portal Query tool was developed to source and visualize REDCap data in interactive, faceted search, enabling cohort discovery by public users. An AWS Lambda function behind an API calculates the counts visually presented, while protecting record level data. The user-friendly interface, quick responsiveness, automatic generation from REDCap, and flexibility to new data, was engineered to sustain the NMVB research community. Results: NMVB implementations enabled a network of 8 research institutions with over 2000 mesothelioma cases, including clinical annotations and biospecimens, and public users' cohort discovery and summary statistics. NMVB usage and impact is demonstrated by high website visits (>150 unique queries per month), resource use requests (>50 letter of interests), and citations (>900) to papers published using NMVB resources. Discussion: NMVB's REDCap implementation and query tool is a framework for implementing federated and integrated rare disease biobanks and registries. Advantages of this framework include being low-cost, modular, scalable, and efficient. Future advances to NVMB's implementations will include incorporation of -omics data and development of downstream analysis tools to advance mesothelioma and rare disease research. Conclusion: NVMB presents a framework for integrating biobanks and patient registries to enable translational research for rare diseases. [Description provided by NIOSH]
• Subjects:
  Database Neoplasms Occupational Health Safety
• Keywords:
  Author Keywords: National Mesothelioma Virtual Bank Biobank Bioinformatics Biological Monitoring Biorepository Databases Medical Research Mesothelioma Rare Disease REDCap Registry

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• ISSN:
  1067-5027
• Document Type:
  Text
• Funding:
  Cooperative Agreement
• Genre:
  Journal Article
• Place as Subject:
  OSHA Region 3 ; Pennsylvania
• CIO:
  National Institute for Occupational Safety and Health (NIOSH)
• Topic:
  Workplace Safety & Health
• Location:
  North America
• Volume:
  30
• Issue:
  10
• NIOSHTIC Number:
  nn:20068080
• Citation:
  J Am Med Inform Assoc 2023 Oct; 30(10):1634-1644
• Contact Point Address:
  Michael J. Becich, Department of Biomedical Informatics, University of Pittsburgh School of Medicine, 5607 Baum Boulevard, Room 521, Pittsburgh, PA 15232
• Email:
  becich@pitt.edu
• Federal Fiscal Year:
  2024
• NORA Priority Area:
  Construction ; Manufacturing
• Performing Organization:
  University of Pittsburgh at Pittsburgh
• Peer Reviewed:
  True
• Start Date:
  20060901
• Source Full Name:
  Journal of the American Medical Informatics Association
• End Date:
  20260831
• Collection(s):
  National Institute for Occupational Safety and Health
• Main Document Checksum:
  urn:sha-512:c4f21b1155f72db044ac6c51d8edf94d23a6546f8d1e82fadffe5d42f4ef775a2f62e62568edf5aae6c2a5be76ce11ae67a55bdf06847fddeed053007bcd6701
• Download URL:
  https://stacks.cdc.gov/view/cdc/230299/cdc_230299_DS1.pdf
• File Type:
  [PDF - 1.12 MB ]