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Sci Data. 2018 Nov 20;5:180258. doi: 10.1038/sdata.2018.258.

A reference set of curated biomedical data and metadata from clinical case reports.

Scientific data

J Harry Caufield, Yijiang Zhou, Anders O Garlid, Shaun P Setty, David A Liem, Quan Cao, Jessica M Lee, Sanjana Murali, Sarah Spendlove, Wei Wang, Li Zhang, Yizhou Sun, Alex Bui, Henning Hermjakob, Karol E Watson, Peipei Ping

Affiliations

  1. The NIH BD2K Center of Excellence in Biomedical Computing, University of California at Los Angeles, Los Angeles, CA 90095, USA.
  2. Department of Physiology, University of California at Los Angeles, Los Angeles, CA 90095, USA.
  3. Department of Cardiology, First Affiliated Hospital, Zhejiang University School of Medicine, 310003, Hangzhou, Zhejiang, P.R. China.
  4. Department of Pediatric and Adult Congenital Cardiac Surgery, Miller Children's and Women's Hospital and Long Beach Memorial Hospital, Long Beach, CA 90806, USA.
  5. Department of Medicine/Cardiology, University of California at Los Angeles, Los Angeles, CA 90095, USA.
  6. Department of Bioinformatics, University of California at Los Angeles, Los Angeles, CA 90095, USA.
  7. Department of Computer Science, University of California at Los Angeles, Los Angeles, CA 90095, USA.
  8. Scalable Analytics Institute (ScAi), University of California at Los Angeles, Los Angeles, CA 90095, USA.
  9. Department of Radiological Sciences, University of California at Los Angeles, Los Angeles, CA 90095, USA.
  10. Molecular Systems Cluster, European Molecular Biology Laboratory-European Bioinformatics Institute, Wellcome Genome Campus, Cambridge, UK.

PMID: 30457569 PMCID: PMC6244181 DOI: 10.1038/sdata.2018.258

Abstract

Clinical case reports (CCRs) provide an important means of sharing clinical experiences about atypical disease phenotypes and new therapies. However, published case reports contain largely unstructured and heterogeneous clinical data, posing a challenge to mining relevant information. Current indexing approaches generally concern document-level features and have not been specifically designed for CCRs. To address this disparity, we developed a standardized metadata template and identified text corresponding to medical concepts within 3,100 curated CCRs spanning 15 disease groups and more than 750 reports of rare diseases. We also prepared a subset of metadata on reports on selected mitochondrial diseases and assigned ICD-10 diagnostic codes to each. The resulting resource, Metadata Acquired from Clinical Case Reports (MACCRs), contains text associated with high-level clinical concepts, including demographics, disease presentation, treatments, and outcomes for each report. Our template and MACCR set render CCRs more findable, accessible, interoperable, and reusable (FAIR) while serving as valuable resources for key user groups, including researchers, physician investigators, clinicians, data scientists, and those shaping government policies for clinical trials.

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