Patients registries / Projects

Second Programme of Community action in the Field of Health 2008-2013
European Register for Multiple Sclerosis - A tool to assess, compare and enhance the status of People with MS throughout the EU [EUReMS]
With the general aim of establishing a European Platform for systematic collection, exchange and analysis of longitudinal data on Multiple Sclerosis (MS) in Europe, the EUReMS project is set up by an ...
With the general aim of establishing a European Platform for systematic collection, exchange and analysis of longitudinal data on Multiple Sclerosis (MS) in Europe, the EUReMS project is set up by an international consortium to address the currently unmet needs of People with Multiple Sclerosis (PwMS)that have been identified by the Consortium as:
-lack of knowledge on the causes of MS;
-scarce knowledge on effectiveness of MS disease modifying drugs;
-lack of data on the burden of MS in Europe.
EUReMS is underpinned by the following principles:
-it should be built on already existing national or regional data collections;
-it should involve and combine the expertise of clinicians, researchers and patient organizations;
-it should address questions at an international level;
-it should include highest available expertise concerning its organization and technical solutions;
-it should ultimately contribute to improve access for PwMS across Europe to evidence-based health care services and offer a cutting-edge research tool to gain further insight into various aspects of MS.
Start date: 01/07/2011 - End date: 01/10/2014

Call: Promote Health (Hp-2010)
Topic: Patients registries
First Programme of Community action in the field of public health (2003-2008)
European Register on Cushing’s Syndrome [ERCUSYN]
The project aims to establish a European registry of patients with Cushing’s syndrome (CS) and develop guidelines for the care of such patients.
Start date: 01/09/2007 - End date: 01/09/2010

Call: Health Information (Hi 2006)
Topic: Patients registries
First Programme of Community action in the field of public health (2003-2008)
European Nephrology Quality Improvement Network [Nephro-QUEST]
The project aims to ensure EU-wide dissemination of a high-quality renal replacement therapy data collection.
Start date: 01/09/2007 - End date: 01/09/2010

Call: Health Information (Hi 2006)
Topic: Patients registries
First Programme of Community action in the field of public health (2003-2008)
EUROCAT: Surveillance of Congenital Anomalies in Europe [EUROCAT]
To provide essential epidemiologic information on congenital anomalies in Europe.
To coordinate the establishment of new registries throughout Europe collecting comparable, standardised data.
To coo...
To provide essential epidemiologic information on congenital anomalies in Europe.
To coordinate the establishment of new registries throughout Europe collecting comparable, standardised data.
To coordinate the detection and response to clusters and early warning of environmental teratogenic exposures.
To evaluate the effectiveness of primary prevention, particularly prevention of neural tube defects and other congenital anomalies by raising peri-conceptional folate status.
To assess the impact of developments in prenatal screening at a population level.
To provide a database and collaborative network for research.
Start date: 01/09/2007 - End date: 01/09/2010

Call: Health Information (Hi 2006)
Topic: Patients registries
First Programme of Community action in the field of public health (2003-2008)
EUROCHIP-III "Common Actions" [EUROCHIP3]
EUROCHIP3 is a multidisciplinary 3-year common-action project involving all EU Member States (MS) to remedy major inequalities in cancer, and form the pillars of a EU cancer control strategy. The canc...
EUROCHIP3 is a multidisciplinary 3-year common-action project involving all EU Member States (MS) to remedy major inequalities in cancer, and form the pillars of a EU cancer control strategy. The cancer inequalities addressed were identified by EUROCHIP2. EUROCHIP3 will work offering economies of scale and solidarity-based initiatives.
Start date: 01/09/2008 - End date: 01/03/2012

Call: Health Information (Hi 2007)
Topic: Patients registries