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  Project funded in 2002: description and outcomesslide
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Area of activity
European information network on rare diseases

Title of Project

NEPHIRD 2 - A European Network for Epidemiological and Public Health 
data collection on Rare Diseases (Phase 2)

Organization

Name:

Centro Nazionale Malattie Rare - 
Istituto Superiore di Sanita

Address:

Viale Regina Elena, 299

IT - 00161 ROME

Telephone / Fax:

+ 39.06.49.90.26.43 / +39.06.44.86.94.40

Web site:

http://www.malattierare.iss.it

E-mail:

diriss@iss.it

Contact person:

Domenica TARUSCIO
(Resp. National Center Rare Diseases)
Tel: +39.06.49.90.28.05
      +39.06.49.90.40.16
Fax: +39.06.49.90.43.70
e-mail: taruscio@iss.it
Web site: Nephird project

Countries participating

Member States

 

Austria

X

Germany

X

The Netherlands

X

Belgium

 

Greece

X

Portugal

X

Denmark

 

Ireland

X

Spain

X

Finland

X

Italy

X

Sweden

X

France

 

Luxembourg

X

United Kingdom

EFTA / EEA Countries

 

Iceland

 

Liechtenstein

 

Norway

Candidate Countries

 

Bulgaria

 

Latvia

 

Slovakia

 

Cyprus

X

Lithuania

 

Slovenia

 

Czech Republic

X

Malta

 

Turkey

 

Estonia

 

Poland

 

 

 

Hungary

 

Romania

 

 

Others

X

Armenia

 

 

 

 

X

Croatia

 

 

 

 

Starting date and
duration of project

- 02/11/2002
- 24 months

Budget

Total cost: 323.822,41 €

Subsidy from the Commission: 226.675,69 €

Statement of the project's aims

Rare diseases (RD) are defined according to the prevalence not higher than 5:10,000 in the EU population. Monitoring, surveillance and early warning for clusters of RD are identified as a priority area, in the European action on RD, underlying the importance of epidemiological data. For most RD, information and knowledge are fragmented, and in particular, epidemiological data are scarce.

However, several networks, mainly on clinical/diagnostic aspects of RD, are already available at regional/national as well as at international level. The first phase of the EU project NEPHIRD was a feasibility study on the establishment of a network of public health institutions on RD, involving 15 EU and associated Countries. The conclusion has been that valid epidemiological and health care data on selected RD can be obtained at European level. Therefore, this project aims at establishing a European network for epidemiological and health care data collection on rare diseases. Moreover, to achieve this target, existing initiatives on clinical/diagnostic aspects of RD should also be exploited.

The specific objectives of the project, based on results of the first phase of NEPHIRD, are:

1. to estimate, the epidemiological indices (i.e. prevalence, incidence) of a group of RD selected as models also in collaboration with already existing clinical/diagnostic networks;

2. to asses the quality of life and quality of health care in RD management within the participating Countries; and

3. to develop indicators of public health for RD.
 

Outcomes of the project

Final report (420 KB)

Summary Table of studies related to Epidemiology of Myasthenia Gravis in European countries (35 KB)

Working groups results (655 KB)

Epidemology of Cornelia de Lange syndrome (125 KB)

Programme of the final meeting (190 KB)

Data Extraction Form "How to assess the prevalence in Europe of each rare disease" (40 KB)

 
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