A Cologne platform pools kidney-disease data in near real time

In most hospitals, the information that could guide a patient's care sits in pieces: a clinic file in one system, lab results in another, and registry records sometimes on an individual researcher's computer. A team in Cologne has built a platform to bring those pieces together, and its first demonstration concerns a kidney disease that affects more than 7 million people worldwide.

The platform is called MEDA-PKD, short for MEdical DAta translation service of Polycystic Kidney Disease. It links clinical follow-up, laboratory results, imaging, medication, quality-of-life information and initial molecular data on new biomarkers. Led by Dr. Roman-Ulrich Müller of the University of Cologne's CECAD Cluster of Excellence and director of the nephrology department at Düsseldorf University Hospital, the work combines data that, as Dr. Philipp Antczak of the Center for Molecular Medicine Cologne puts it, often stays hidden within hospital systems. The aim is to make it usable almost in real time, first for research and later, the team says, for individual patient care.

The clearest result concerns tolvaptan, the only medicine specifically authorized for this disease. Working from routine clinical data, the researchers report that the treatment slows the loss of kidney function. This is the kind of finding the platform was built to produce: an ongoing check on how a treatment performs outside a trial. The benefit was also visible in consultations. In an initial study, seven experienced doctors rated MEDA-PKD very user-friendly, and the time needed to compile information for a tolvaptan consultation fell by approximately 72%. Patients can also consult the statistics and analyses themselves. The figures come from the team that built the platform, and the study involved seven doctors, so they point to a promising first step rather than a settled measure.

For patients and their doctors, the immediate gain is time and clarity during a consultation, and Dr. Sita Arjune of University Hospital Cologne describes it as already in use: "this is the first practical example of an approach that could also be applied to other conditions in the future." The team says the basic framework can be adapted to other chronic kidney diseases, heart failure, cystic fibrosis or cancer. It names as its long-term goal a 'learning health care system' in which everyday care generates knowledge as it goes. The researchers give no date for use beyond Cologne and Düsseldorf, and no timetable for other diseases.