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@ARTICLE{Engels:292102,
      author       = {C. Engels$^*$ and J. Kern$^*$ and Z. Dudová and N.
                      Deppenwiese and A. Kiel$^*$ and B. Kroll and T. Kussel$^*$
                      and C. Schüttler and R. Tomášik and M. Hummel$^*$ and M.
                      Lablans$^*$},
      collaboration = {G. B. Alliance},
      othercontributors = {M. Breu and D. Croft and N. Deppenwiese and C. Dolch and P.
                          Duhm-Harbeck and L. Ebert and C. Engels and J. Kern and A.
                          Kiel and C. Knell and A.-K. Kock-Schoppenhauer and B. Kroll
                          and T. Kussel and J. Linde and C. Maier and M. Neumann and
                          M. Öfelein and M. Rambow and S. Sahr and C. Schüttler and
                          F. Stampe and D. Tas and R. Tomášik and H. Ulrich and M.
                          Lablans and H.-U. Prokosch and M. Hummel},
      title        = {{T}he sample locator: {A} federated search tool for
                      biosamples and associated data in {E}urope using {HL}7
                      {FHIR}.},
      journal      = {Computers in biology and medicine},
      volume       = {180},
      issn         = {0010-4825},
      address      = {Amsterdam [u.a.]},
      publisher    = {Elsevier Science},
      reportid     = {DKFZ-2024-01601},
      pages        = {108941},
      year         = {2024},
      abstract     = {This study outlines the development of a highly
                      interoperable federated IT infrastructure for academic
                      biobanks located at the major university hospital sites
                      across Germany. High-quality biosamples linked to clinical
                      data, stored in biobanks are essential for biomedical
                      research. We aimed to facilitate the findability of these
                      biosamples and their associated data. Networks of biobanks
                      provide access to even larger pools of samples and data even
                      from rare diseases and small disease subgroups. The German
                      Biobank Alliance (GBA) established in 2017 under the
                      umbrella of the German Biobank Node (GBN), has taken on the
                      mission of a federated data discovery service to make
                      biosamples and associated data available to researchers
                      across Germany and Europe.In this context, we identified the
                      requirements of researchers seeking human biosamples from
                      biobanks and the needs of biobanks for data sovereignty over
                      their samples and data in conjunction with the sample
                      donor's consent. Based on this, we developed a highly
                      interoperable federated IT infrastructure using standards
                      such as Fast Healthcare Interoperability Resources (HL7
                      FHIR) and Clinical Quality Language (CQL).The infrastructure
                      comprises two major components enabling federated real-time
                      access to biosample metadata, allowing privacy-compliant
                      queries and subsequent project requests. It has been in use
                      since 2019, connecting 16 German academic biobanks, with
                      additional European biobanks joining. In production since
                      2019 it has run 4941 queries over the span of one year on
                      more than 900,000 biosamples collected from more than
                      170,000 donors.This infrastructure enhances the visibility
                      and accessibility of biosamples for research, addressing the
                      growing demand for human biosamples and associated data in
                      research. It also underscores the need for improvements in
                      processes beyond IT infrastructure, aiming to advance
                      biomedical research and similar infrastructure development
                      in other fields.},
      keywords     = {Biobanks (Other) / Biomedical research (Other) / Biosamples
                      (Other) / FAIR data sharing (Other) / Feasibility search
                      (Other) / Federated system (Other) / IT infrastructure
                      (Other) / Software tools (Other) / Technology development
                      (Other)},
      cin          = {BE01 / HD01 / E260},
      ddc          = {570},
      cid          = {I:(DE-He78)BE01-20160331 / I:(DE-He78)HD01-20160331 /
                      I:(DE-He78)E260-20160331},
      pnm          = {315 - Bildgebung und Radioonkologie (POF4-315)},
      pid          = {G:(DE-HGF)POF4-315},
      typ          = {PUB:(DE-HGF)16},
      pubmed       = {pmid:39106671},
      doi          = {10.1016/j.compbiomed.2024.108941},
      url          = {https://inrepo02.dkfz.de/record/292102},
}