Diagnostic / 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: Diagnostic
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: Diagnostic
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: Diagnostic
Second Programme of Community action in the Field of Health 2008-2013
NEW e-HEALTH SERVICES FOR THE EUROPEAN REFERENCE NETWORK ON RARE ANAEMIAS [e-ENERCA]
The general objective of e-ENERCA is to provide professionals and patients with e-Health tools to assure the same level of access to rare anaemias (RA) services across Europe. e-Health services will b...
The general objective of e-ENERCA is to provide professionals and patients with e-Health tools to assure the same level of access to rare anaemias (RA) services across Europe. e-Health services will be developed through the implementation of three e-platforms endorsed on the ENERCA website. The specific objectives are: 1) to enhance the creation and use of European inventories to gather updated and reliable data on centres of expertise (CEs) and epidemiological figures 2)To facilitate the continuing medical education and best practices 3) To create a telemedicine platform for the provision of health care and medical advice avoiding the need of physical travelling 4) To promote the recognition of CEs on RA by national health authorities and ENERCA as the European Reference Network for RA 5) To develop e-Health tools in the field of RA and promote their use among the scientific community and patients` associations and 6) to assure the project sustainability in the future.
Start date: 01/01/2013 - End date: 01/01/2016

Call: Promote Health (Hp-2012)
Topic: Diagnostic
Second Programme of Community action in the Field of Health 2008-2013
ED_FY2014 [ED_FY2014]
MISSION:
EUROPA DONNA-The European Breast Cancer Coalition (ED) is an independent, non-profit pan-European coalition of affiliated grassroots groups whose mission is to ensure that all women have acce...
MISSION:
EUROPA DONNA-The European Breast Cancer Coalition (ED) is an independent, non-profit pan-European coalition of affiliated grassroots groups whose mission is to ensure that all women have access to accurate information & the highest quality breast cancer screening, diagnosis and treatment. We are widely recognised to be Europe’s breast cancer (BC) advocacy organisation, with 18 years experience advocating for evidence-based best practice breast services.

VISION:
ED provides critically important advocacy, education & information with the aim of:
• greatly INCREASING EARLY DETECTION & thereby drastically DECREASING MORTALITY resulting from breast cancer
• bringing QUALITY OF TREATMENT to the highest level for ALL women suffering from breast cancer and thereby DECREASING MORTALITY resulting from the disease
• increasing PREVENTION, by promoting & educating all European women about healthy lifestyle practices

ED’s general objectives are its Ten Goals, which are based on the aims enshrined in its Constitution. We seek: to promote the dissemination and exchange of factual, up-to-date information on breast cancer throughout Europe; to promote breast awareness; to emphasise the need for appropriate screening and early detection; to campaign for the provision of optimum treatment; to ensure provision of quality supportive care throughout and after treatment; to advocate appropriate training for health professionals; to acknowledge good practice and promote its development; to demand regular quality assessment of medical equipment; to ensure that all women understand fully any proposed treatment options, including entry into clinical trials and their right to a second opinion; to promote the advancement of breast cancer research.

VALUES:
ED provides women in member countries with scientifically proven information, evidence-based education and tools, a strong sense of cross-border solidarity and the collective power necessary to bring about positive change on the large-scale while reducing inequalities between countries.

The above are communicated to stakeholders on ED’s websites and in our publications and are articulated at ED-hosted or attended events.
Start date: 01/01/2014 - End date: 01/01/2015

Call: Improve Citizen''S Health Security (Hs-2013)
Topic: Diagnostic