Patients registries / Projects

First Programme of Community action in the field of public health (2003-2008)
The State of Reproductive Health and Fertility in the European Union [REPRODUCTIVE HEALTH REPORT]
To create a comprehensive report that describes the current state of sexual and reproductive health (SRH) in men and women, including fertility, within the EU.
Start date: 01/06/2008 - End date: 01/06/2011

Call: Health Information (Hi 2007)
Topic: Patients registries
Second Programme of Community action in the Field of Health 2008-2013
EUROPEAN REFERENCE NETWORK OF EXPERT CENTRES IN RARE ANAEMIAS [ENERCA 3]
The main objective of ENERCA 3 is the establishment of a European Reference Network (ERN) of Expert Centres (EC) in Rare Anaemias (RA). Identify appropriate centres of expertise (Expert Centres) throu...
The main objective of ENERCA 3 is the establishment of a European Reference Network (ERN) of Expert Centres (EC) in Rare Anaemias (RA). Identify appropriate centres of expertise (Expert Centres) throughout each national territory involved in ENERCA 3 Project is one of its most important goals. The ERN will establish a link between the ECs and will serve as a platform for foster their participation respecting the national competences and rules in regard of their authorisation or recognition. Once established the ERN will be responsible of organize healthcare pathways for patients suffering from rare anaemias through the establishment of cooperation with relevant experts and exchange of professionals and expertise within country or from abroad when necessary. The ECs will include in their plans or strategies the necessary conditions for the diffusion and mobility of expertise and knowledge on order to facilitate the treatment of patients in their proximity. One of the most important tools for ENERCA activities will be the Web site (www.enerca.org), established by ENERCA 1 and consolidated by ENERCA 2. The Website will be also very useful for giving support to the use of information and communication technologies such as telemedicine where it is necessary to ensure distant access to the specific healthcare needed.
Start date: 01/06/2009 - End date: 01/06/2012

Call: Promote Health (Hp-2008)
Topic: Patients registries
Second Programme of Community action in the Field of Health 2008-2013
European network for central hypoventilation syndromes : Optimizing health care to patients [EU-CHS]
The ECHS project aims to optimize health care to patients with CHS in Europe. Central hypoventilation syndromes (CHS) are extremely rare disorders of central autonomic respiratory control and global d...
The ECHS project aims to optimize health care to patients with CHS in Europe. Central hypoventilation syndromes (CHS) are extremely rare disorders of central autonomic respiratory control and global dysfunction of autonomous nervous system. CHS include a heterogeneous group of not fully characterized diseases. Severe chronic central hypoventilation is the hallmark and the most life-threatening feature. Treatment requires advanced techniques of ventilation support (positive pressure ventilation, chest shell ventilation, phrenic nerve pacing, diaphragm pacing) during lifetime. However, currently large disparities exist in access to diagnosis and treatment across Europe while long-term outcomes are unknown.
Start date: 01/06/2009 - End date: 01/06/2012

Call: Promote Health (Hp-2008)
Topic: Patients registries
First Programme of Community action in the field of public health (2003-2008)
European Health and Life Expectancy Information System (EHLEIS) [EHLEIS]
The project aims to monitor and explore gender gaps and inequalities in health expectancies between EU Member States and identify explanatory factors for convergent or divergent trends.
Start date: 01/07/2007 - End date: 01/07/2010

Call: Health Information (Hi 2006)
Topic: Patients registries
First Programme of Community action in the field of public health (2003-2008)
Better Statistics for Better Health for Pregnant Women and Their Babies: European Health Reports [EURO-PERISTAT III]
The project seeks to produce and disseminate a European Perinatal Health Report based on data collected in 2006 in all EU countries which includes policy-relevant analyses of maternal and child health...
The project seeks to produce and disseminate a European Perinatal Health Report based on data collected in 2006 in all EU countries which includes policy-relevant analyses of maternal and child health outcomes, care provision, inequalities and migrant health. The project will also develop an Action Plan for Sustainable Perinatal Health Reporting with recommendations about the mission, structure, operation and partners of an information network. Partnership with other EU funded projects will be reinforced.
Start date: 01/07/2008 - End date: 01/01/2010

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