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@ARTICLE{Intemann:306358,
      author       = {T. Intemann and K. Kaulke and D.-K. Kipker and V. Lettieri
                      and C. Stallmann and C. O. Schmidt and M. Bialke and C.
                      Hampf and D. Stahl and M. Lablans$^*$ and K. Kraywinkel and
                      S. Bartholomäus and A.-F. Näher and G. Tremper$^*$ and M.
                      Lambarki$^*$ and S. March and F. Prasser and A. C. Haber and
                      J. Drepper and I. Schlünder and T. Kirsten and I. Pigeot
                      and U. Sax and B. Buchner and S. C. Semler and W. Ahrens},
      title        = {{I}mproving record linkage for health research-how to
                      overcome deficiencies? [{V}erbesserung des {R}ecord
                      {L}inkage für die {G}esundheitsforschung in {D}eutschland
                      – wie können {D}efizite behoben werden?]},
      journal      = {Bundesgesundheitsblatt, Gesundheitsforschung,
                      Gesundheitsschutz},
      volume       = {68},
      number       = {12},
      issn         = {0007-5914},
      address      = {Heidelberg},
      publisher    = {Springer},
      reportid     = {DKFZ-2025-02570},
      pages        = {1440-1449},
      year         = {2025},
      note         = {2025 Dec;68(12):1440-1449},
      abstract     = {Linking different health data at the personal level (record
                      linkage, RL) allows answering scientific questions that
                      could otherwise not be answered by a single data source.
                      Linked data therefore offer great potential for health
                      research to improve prevention, treatment, and care at the
                      population level. Personal health data are protected by
                      strict legal regulations. Its use requires balancing
                      legitimate interests in protecting personal data and health
                      benefits. However, current laws and their interpretations in
                      Germany place severe restrictions on health data RL such
                      that its potential for improving health outcomes is still to
                      be leveraged. In Germany, RL is also hindered by the lack of
                      a unique identifier that enables error-free merging across
                      different data sources. Overall, there is a lack of
                      interoperable solutions to perform comprehensive RL across
                      studies and data sources in a secure environment.In this
                      article, we propose solutions for the linkage of personal
                      health data from different sources based on the White Paper
                      - Verbesserung des Record Linkage für die
                      Gesundheitsforschung in Deutschland. Our proposed solutions
                      include, among others, the establishment of a health ID and
                      the creation of a decentralized federated research data
                      infrastructure with central components. Although these
                      proposals are in line with the General Data Protection
                      Regulation, there is a need for further legal regulation in
                      specific cases.},
      subtyp        = {Review Article},
      keywords     = {Data linkage (Other) / Data sharing (Other) / FAIR
                      principles (Other) / Research data infrastructure (Other) /
                      Unique identifier (Other)},
      cin          = {E260 / HD01},
      ddc          = {610},
      cid          = {I:(DE-He78)E260-20160331 / I:(DE-He78)HD01-20160331},
      pnm          = {315 - Bildgebung und Radioonkologie (POF4-315)},
      pid          = {G:(DE-HGF)POF4-315},
      typ          = {PUB:(DE-HGF)16},
      pubmed       = {pmid:41263970},
      doi          = {10.1007/s00103-025-04153-y},
      url          = {https://inrepo02.dkfz.de/record/306358},
}