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Modul „New Health Care Systems“ – TRANSLATE-NAMSE

Topic T4 – Rare Diseases

Spokeperson: Prof. Dr. Heiko Krude (Berlin, Charité)

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Improvement of Patient-Centered Care of Persons with Rare Diseases through Implementation of Approved Procedures of the National Action Schedule (NAMSE) – TRANSLATE-NAMSE

For a quality assured patient-centered care of patients with rare diseases inter-regional, multi-professional and cross-sectoral networks are essential.

The project should be lead in patients with selected rare diseases to (i) a faster diagnosis (ii) an increased efficiency in patient-centered care and (iii) an increased quality of patient-centered care. Therefore three patient relevant problems of the current health care system are addressed. For the realization the suggested structures and processes of NAMSE will be implemented in all participating institutes for the three project areas.

The additional patient-centered care services covers the following: 

  • Diagnosis of uncertain cases will be accelerated through structured procedures and patient boards in a nationwide process.
  • The time to therapy initiation will be reduced through involvement of inter-regional expertise and case-management.
  • Via IT supported communication, access to data of the centers and structured transition into adult medicine the care effectivity and sustainability of patient-centered care will be improved.  The results will be compared to patients treated with current care systems. 

Nationwide network processes which are proved in a high number of cases could be implemented into the patient-centered care procedure. Positive effect will be generated through synergy, cancellation of redundancy and better compliance.


Prof. Dr. Heiko Krude
Institute of Experimental Pediatric Endocrinology
Charité – Universitätsmedizin Berlin
Augustenburger Platz 1
13353 Berlin
t: +49 30 450566292

Members of consortium

  • University Medical Center Hamburg-Eppendorf (UKE)
  • University Hospital Lübeck
  • University Hospital Tübingen
  • Heidelberg University Hospital
  • University Hospital of Munich
  • University Dresden
  • University Hospital Bonn
  • Essen University Hospital
  • Center for Evidence-Based Healthcare
  • Allianz Chronischer Seltener Erkrankungen
  • AOK Nordost
  • Berlin School of Public Health