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Working Groups
To achieve their objectives, the RDTF created three Working Groups (WG) reflecting
topics it considered priorities.
1) Standards of Care
Since June 2005, this WG has been working on the concepts of Centres of Expertise (CE) and European Reference Networks (ERN)
in the field of RD. Its work feeds into a more general reflection on CE and ERN undertaken by the EC's High Level Group on
Health Services and Medical Care. The group also considers discussions on genetic testing, genetic screening, and orphan drugs.
European Centres of Reference - June 3, 2005
Agenda
Meeting Report
Presentations: France;
Italy;
UK;
Spain;
Denmark
Overview of current Centres of Reference on rare diseases in the EU - September 12, 2005
Overview of current Centres of
Reference on rare diseases
in the EU - final
report
Annexes
Presentation to the High Level Group on Health Services and Medical Care
European Centres of Reference - September 1, 2006
Agenda
Meeting Report: Centres of Reference for rare diseases in Europe - State-of-the-art in 2006
and Recommendations
of the Rare Diseases Task Force
Presentations: RDTF; Orphanet
Assessing treatable rare diseases and the proportion of patients eligible for treatment - May 30, 2007
Agenda
Report
Presentations: RDTF; Eurordis;
Orphanet
Assessing the European Added-Value of European Reference Networks - March 11, 2008
Minutes
Report
Presentations: Questions;
Recommendations
2) Coding, classification and
data confidentiality
This WG collaborates closely with the WHO on its International Classification of Diseases and will contribute
to the revision of the ICD-10 considering all existing classifications to ensure transparency.
State of the Art in Coding and Classification - October 11, 2006
Agenda
Minutes
Presentations: WHO;
CINEAS;
DIMDI;UKGTN;
Veneto Register of RD
WHO ICD-10 Revision Process - May 2, 2007
Agenda
Minutes
Presentations: WHO;
RDTF;
Orphanet
WHO ICD-10 Revision Process - February 6, 2008
Agenda
Minutes
Presentations: WHO;
RDTF;
Orphanet;
Institute of Medical Technology
3) Public health indicators
The Public health indicators (PHI) working group will consider the
selection of rare diseases with
high priority for epidemiological surveillance. It will determine the
definition of rare diseases which can be identified in mortality
certificates and will work on a feasibility study for using mortality
data as public heath indicators. The
PHI working group met for the first time on 30 January 2006.
Defining a Work Plan - January 30, 2006
Agenda
Minutes
Presentations:
RDTF
J.Bloch, INVS, France
M. Posada, Extramadura, Spain
G.Gatta, Rare Cancers, Italy
D. Taruscio, ISS, Italy
E. Jougla, INSERM, France
J. Donadieu, INVS, France
Health Indicators in the Field of RD - March 12, 2008
Report
Presentation
4) Additional Workshops
Patient Registries and Databases - March 13, 2008
Presentation
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