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Termindetails

TMF-Workshop Registries for patients with undiagnosed diseases (Berlin)

Termin: Donnerstag, 21. November 2013, 10:30 - 17:00

Kategorie: TMF-Veranstaltungen



Registries for patients with undiagnosed rare diseases 

The correct and timely diagnosis of rare diseases is a common challenge. Therefore, the German Action Plan on Rare Diseases recommends the development of a national registry for patients with undiagnosed rare diseases. In this context, a distinction will be made between patients with a tentative diagnosis and patients with an as yet unknown rare disease.

  

Objectives of the workshop

It is the overall objective of the workshop to analyse, whether it is feasible and helpful to collect information on patients with undiagnosed diseases within a registry, in order to enable or accelerate diagnosis and/or adequate therapy. In particular, the following questions shall be addressed:  

  • What are the options to collect information on patients with an undiagnosed rare disease as a basis for future research and diagnostic evaluation?
  • What are the key issues/challenges of national registries for undiagnosed rare diseases?
  • How could a registry for undiagnosed rare diseases be linked efficiently to interested researchers in the field? 

The workshop will be held in English, in order to enable international guests to present their projects and participate in the discussion.
  

Programme

  1. Download Flyer: Programme and Details [pdf | 323 kb]

 

Registration

  1. Registration for the workshop

  
Accomodation

  1. Booking Form for accomodation in Hotel One near Berlin Hauptbahnhof (Booking deadline: 9 October 2013)


 
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