Quality evaluation / Projects

Second Programme of Community action in the Field of Health 2008-2013
AP-HP_Porphyria_FY2011 [AP-HP_FY2011]
Our mission is to improve the lives of porphyria patients by improving the diagnosis and treatment of these rare conditions. EPNET has been funded by the EU Commission (DG SANCO, PHEA programme). The ...
Our mission is to improve the lives of porphyria patients by improving the diagnosis and treatment of these rare conditions. EPNET has been funded by the EU Commission (DG SANCO, PHEA programme). The objective is to provide an effective network of specialist porphyria centres in each country. EPNET contains 28 EU specialist centres that work together to develop an up-to-date approach to the management of patients and families with porphyria that conforms to uniform standards. EPNET focuses on: provision of information to patients (in their own languages) and healthcare professionals (HCPs); collection of information on safety of drugs; use of external quality assessment to develop quality standards for diagnosis and clinical advice; a web-based registry to collect data about the porphyrias to inform clinical practice and healthcare planning. Progress is communicated to partners through regular meetings and reports. Information on the porphyrias and drug selection is made available to patients, public health authorities and HCP’s at www.porphyria-europe.org; www.drugs-porphyria.org.
Start date: 01/01/2011 - End date: 01/01/2012

Call: Promote Health (Hp-2010)
Topic: Quality evaluation
Second Programme of Community action in the Field of Health 2008-2013
Assistance Publique Hôpitaux de Paris [AP-HP-Wilson FY2011]
EuroWilsoN (EW) mission is to improve quality of care and access to multi-disciplinary expertise for EU patients with Wilson’s disease (WD). From 2004-2008 EW (LSHM CT2004 503430), has achieved:

- ...
EuroWilsoN (EW) mission is to improve quality of care and access to multi-disciplinary expertise for EU patients with Wilson’s disease (WD). From 2004-2008 EW (LSHM CT2004 503430), has achieved:

- An active patient registry
- Interaction between clinicians and an expert validation committee
- External molecular quality network
- A DVD in the neurological evaluation
- Transferring knowledge by contribution to the public consultation papers and participation in policy conferences
- organisation of a European patient meeting during the Eurordis conference

EW’s goals include maintaining and enhancing this network; the French centre for WD serves as a network model. The network will include all stakeholders involved in patient care: medical, scientific para-medical, EU authorities and patients’ associations. EW will:

- Promote exchange between participants
- Provide up-to-date disease information on its website (eurowilson.org) and Orphanet
- Develop and publish evidence based clinical guidelines
- Enhance the registry to provide epidemiological data, outcome indicators, country comparisons and to facilitate collaborative research and public health projects
- Support patients and patient associations in the EU

Start date: 01/01/2011 - End date: 01/01/2012

Call: Promote Health (Hp-2010)
Topic: Quality evaluation
Second Programme of Community action in the Field of Health 2008-2013
An EU Rare Diseases Registry for Wolfram Syndrome, Alstrom Syndrome and Bardet Biedl Syndrome [EURO-WABB]
The general objective of this project is to support efficient diagnosis, treatment, and research for the overlapping rare genetic diseases Wolfram, Alstrom and Bardet Biedl syndromes and other rarer ...
The general objective of this project is to support efficient diagnosis, treatment, and research for the overlapping rare genetic diseases Wolfram, Alstrom and Bardet Biedl syndromes and other rarer diabetes syndromes in Europe. We will achieve this by implementing an EU registry for Rare Diabetes Syndromes (RDS), containing clinical, genetic diagnostic and outcome data. The purpose of the registry is: a) to establish the natural history of RDS (their characteristics, management and outcomes); b) to assess clinical effectiveness of management and quality of care; c) to provide an inventory of patients for recruitment to intervention studies; d) to establish genotype-phenotype correlations. We will achieve high usage of the registry by linking it to rapid genetic testing; and to up to date, accurate information, FAQS, and education material.
Start date: 01/01/2011 - End date: 01/07/2014

Call: Promote Health (Hp-2010)
Topic: Quality evaluation
Second Programme of Community action in the Field of Health 2008-2013
European registry and network for Intoxication type Metabolic Diseases [E-IMD]
The overall aim of the European registry and network for Intoxication type Metabolic Diseases (E-IMD)is to promote health for individuals affected with rare organic acidurias (OADs) or urea cycle defe...
The overall aim of the European registry and network for Intoxication type Metabolic Diseases (E-IMD)is to promote health for individuals affected with rare organic acidurias (OADs) or urea cycle defects (UCDs). E-IMD has two specific objectives:
(1) To establish a European patient registry describing the disease course, epidemiology, diagnostic and therapeutic strategies for OADs and UCDs and to provide information to national and EU healthcare authorities. Anonymised data collection via a web-based password-protected EU registry will be based on routine follow-up parameters in 15 EU countries.
(2) To provide European evidence-based consensus care protocols for patients with OADs and UCDs. Based on the largest available collection of patient data (see objective 1) and a systematic literature search, a European consensus group will describe the best evidence available for the diagnosis and treatment. Consensus care protocols will be translated into official EU languages, provided via the E-IMD website and serve as a template for national guidelines and patient brochures.
Start date: 01/01/2011 - End date: 01/05/2014

Call: Promote Health (Hp-2010)
Topic: Quality evaluation
Second Programme of Community action in the Field of Health 2008-2013
BIOEF_FY2013 [BIOEF_FY2013]
EuroNeoNet (ENN) is a specialised neonatal network to provide networking to European neonatologists and other stakeholders a tool to perform quality assurance and benchmarking, and a framework to faci...
EuroNeoNet (ENN) is a specialised neonatal network to provide networking to European neonatologists and other stakeholders a tool to perform quality assurance and benchmarking, and a framework to facilitate the development of high-quality outcome epidemiological research, implement quality improvement initiatives and randomised clinical trials. ENN is affiliated to the European Society for Paediatric Research and the European Society for Neonatology (ESPR/ESN).

The ENN Mission is to enhance neonatal networking to help neonatologist to promote a culture for quality of care improvements and patient safety, family-cantered and developmental care and dissemination of evidence-based interventions, e-learning, and to effectively conduct academically-driven clinical trials, case-control, cohort, cluster and nested studies.

Our Vision statement s ithat all Very Low-Gestational Age (VLGA, <32 weeks) and Very-Low-Birth-Weight (VLBW, <1500 g) newborn infants born in Europe, receive the best possible health care no matter where born, by preventing any existing inequalities and that all Neonatal Units shear a standardised perinatal risk and protective factors, neonatal interventions and short- and long-term outcomes for those tinny and vulnerable infants.

Our organization values are guided by the democratic, transparency, equal opportunity, values common to the European culture, and to shear all information gathered to help any interested stakeholders.

Our strategic aim is to consolidate a standardised set of health indicators to assess the quality of health care delivered to very premature infants by European institutions, regions and countries. We aim to reduce neonatal morbidity and mortality and improve their health status at 2 years, detect any inequalities that might exist.

Communication to the key interested stakeholders is mainly performed via our interactive website (www.euroneonet.org), but periodic report, newsletters, leaflets, publications, abstracts and presentations are also periodically and widely disseminated.


Start date: 01/01/2013 - End date: 01/01/2014

Call: Generate And Disseminate Health Information And Knowledge (Hi-2012)
Topic: Quality evaluation