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
- Download Flyer: Programme and Details [pdf | 323 kb]
Registration
- Registration for the workshop
Accomodation
- Booking Form for accomodation in Hotel One near Berlin Hauptbahnhof (Booking deadline: 9 October 2013)