{
  "abstract": "The use of medical real-world data is constrained by fragmented data infrastructures and the absence of tools integrating longitudinal clinical with molecular data at scale. Autosomal dominant polycystic kidney disease (ADPKD), the most common monogenic cause of kidney failure, exemplifies this gap given its phenotypic complexity and the need for individualized treatment decisions. We present MEDA-PKD (MEdical DAta translation service of Polycystic Kidney Disease), an interactive, near-real-time analytics platform that integrates clinical routine with research data from the German AD(H)PKD Tolvaptan Registry (NCT02497521, DRKS00008910) into a harmonized database ( https://doi.org/10.18716/adpkd_registry ). MEDA-PKD provides automated near-real-time analysis and dynamic visualization, replacing traditional static approaches to clinical cohorts. As of March 2026, MEDA-PKD visualized data from 1735 patients (mean follow-up 796 days). eGFR slope analysis of data from patients initiating tolvaptan therapy (332 patients) demonstrates the platform's capacity to evaluate real-world therapeutic impact in real-time. Other tabs include family history, medication, lifestyle, quality of life and a wide array of lab values (20,894 entries). Besides, MEDA-PKD integrates proteomics data and allows for secure individual patient-level data access. MEDA-PKD represents a paradigm shift by transforming static cohort data into a living, actionable knowledge resource in ADPKD and will serve as a template for other diseases.",
  "abstract_shown": true,
  "affiliations": [
    "Department II of Internal Medicine and Center for Molecular Medicine Cologne, University of Cologne, Faculty of Medicine and University Hospital Cologne, Cologne, Germany.",
    "Cologne Excellence Cluster on Cellular Stress Responses in Aging-Associated Diseases (CECAD), University of Cologne, Faculty of Medicine and University Hospital Cologne, Cologne, Germany.",
    "Center for Rare Diseases Cologne, Faculty of Medicine and University Hospital Cologne, University of Cologne, Cologne, Germany.",
    "Center of Excellence in Nephrology, University Hospitals Aachen, Cologne, Düsseldorf, North Rhine-Westphalia, Germany.",
    "Institute for Biomedical Informatics, University of Cologne, Faculty of Medicine and University Hospital Cologne, Cologne, Germany.",
    "Institute of Human Genetics, University of Cologne Faculty of Medicine and University Hospital Cologne, Würzburg, Germany.",
    "Institute for Genetics, University of Cologne, Cologne, Germany.",
    "Department of Nephrology, Medical Faculty, University Hospital Düsseldorf, Heinrich-Heine-University Düsseldorf, Düsseldorf, Germany.",
    "Emergency Department, University of Cologne, Faculty of Medicine and University Hospital Cologne, Cologne, Germany.",
    "Department of Internal Medicine III, University Hospital Jena, Friedrich-Schiller-University, Jena, Germany.",
    "Department of Internal Medicine I, University Hospital Schleswig-Holstein, Campus Lübeck, Lübeck, Germany.",
    "Nierenzentrum Lübeck, Lübeck, Germany.",
    "Institute for Diagnostic and Interventional Radiology, University of Cologne, Faculty of Medicine and University Hospital Cologne, Cologne, Germany.",
    "Department of Nephrology and Medical Intensive Care, Charité - Universitätsmedizin Berlin, Berlin, Germany.",
    "Renal Division, Department of Medicine, Faculty of Medicine and Medical Center, University of Freiburg, Freiburg, Germany.",
    "Division of Nephrology, Department of Endocrinology, Nephrology, and Rheumatology, University of Leipzig Medical Center, Leipzig, Germany.",
    "Bonacci GmbH, Cologne, Germany.",
    "Department of Nephrology and Hypertension, Hannover Medical School, Hannover, Germany.",
    "Department of Nephrology and Hypertension, University Hospital Schleswig-Holstein, Kiel, Germany.",
    "Center for Rare Diseases Düsseldorf, Medical Faculty, University Hospital Düsseldorf, Heinrich-Heine-University Düsseldorf, Düsseldorf, Germany.",
    "Department of Clinical Studies and Epidemiology, Comprehensive Heart Failure Center, University Hospital Würzburg, Würzburg, Germany.",
    "Department II of Internal Medicine and Center for Molecular Medicine Cologne, University of Cologne, Faculty of Medicine and University Hospital Cologne, Cologne, Germany. philipp.antczak@uk-koeln.de.",
    "Cologne Excellence Cluster on Cellular Stress Responses in Aging-Associated Diseases (CECAD), University of Cologne, Faculty of Medicine and University Hospital Cologne, Cologne, Germany. philipp.antczak@uk-koeln.de.",
    "Center of Excellence in Nephrology, University Hospitals Aachen, Cologne, Düsseldorf, North Rhine-Westphalia, Germany. philipp.antczak@uk-koeln.de.",
    "Department II of Internal Medicine and Center for Molecular Medicine Cologne, University of Cologne, Faculty of Medicine and University Hospital Cologne, Cologne, Germany. roman-ulrich.mueller@med.uni-duesseldorf.de.",
    "Cologne Excellence Cluster on Cellular Stress Responses in Aging-Associated Diseases (CECAD), University of Cologne, Faculty of Medicine and University Hospital Cologne, Cologne, Germany. roman-ulrich.mueller@med.uni-duesseldorf.de.",
    "Center for Rare Diseases Cologne, Faculty of Medicine and University Hospital Cologne, University of Cologne, Cologne, Germany. roman-ulrich.mueller@med.uni-duesseldorf.de.",
    "Center of Excellence in Nephrology, University Hospitals Aachen, Cologne, Düsseldorf, North Rhine-Westphalia, Germany. roman-ulrich.mueller@med.uni-duesseldorf.de.",
    "Department of Nephrology, Medical Faculty, University Hospital Düsseldorf, Heinrich-Heine-University Düsseldorf, Düsseldorf, Germany. roman-ulrich.mueller@med.uni-duesseldorf.de.",
    "Center for Rare Diseases Düsseldorf, Medical Faculty, University Hospital Düsseldorf, Heinrich-Heine-University Düsseldorf, Düsseldorf, Germany. roman-ulrich.mueller@med.uni-duesseldorf.de."
  ],
  "article_type": "research article",
  "arxiv": null,
  "author_total": 25,
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      "name": "Roman-Ulrich Müller"
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    {
      "name": "AD(H)PKD Study Group"
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  "bibtex": "https://research.draconitic.com/paper/3wrksqa473zp3.bib",
  "cited_by": 0,
  "doi": "10.1038/s41746-026-03267-0",
  "fulltext_url": "https://europepmc.org/articles/PMC13683356",
  "id": "3wrksqa473zp3",
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  "landing_url": "https://europepmc.org/article/MED/42901931",
  "language": "eng",
  "licence": "CC-BY",
  "licence_label": "CC BY",
  "licence_source": "article",
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  "native_subjects": [
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      "1311|Genetic and Kidney Cyst Diseases"
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  "pdf_url": "https://europepmc.org/articles/PMC13683356?pdf=render",
  "pmcid": "PMC13683356",
  "pmid": "42901931",
  "published": "2026-10-20",
  "publisher": "Nature Portfolio",
  "ris": "https://research.draconitic.com/paper/3wrksqa473zp3.ris",
  "sources": [
    {
      "first_seen": "2026-10-30T12:19:32Z",
      "native_id": "MED:42901931",
      "source": "europepmc",
      "url": "https://europepmc.org/article/MED/42901931"
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      "first_seen": "2026-10-30T13:46:25Z",
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  "subjects": [
    {
      "field": "biology",
      "origin": "openalex:1311|Genetic and Kidney Cyst Diseases",
      "subfield": "genetics-genomics"
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  ],
  "title": "MEDA-PKD: a dynamic, real-time analytics platform for precision care in autosomal dominant polycystic kidney disease.",
  "title_text": "MEDA-PKD: a dynamic, real-time analytics platform for precision care in autosomal dominant polycystic kidney disease.",
  "type": "peer-reviewed",
  "updated_at": "2026-10-30T13:46:25Z",
  "url": "https://research.draconitic.com/paper/3wrksqa473zp3",
  "venue": "NPJ digital medicine",
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