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Finished projects

GENED

Genetic education - Improving non-genetics health professionals' understanding of genetic testing 
GenEd is an innovative 3-year collaboration collecting data for a needs based assessment of education in genetics for primary health care providers in 11 countries.

Deliverables

  •  identification of core competences in genetics 
  •  a catalogue of on-line educational materials 
  •  development of educational materials 
  •  European wide collaboration for professional education in genetics 
  •  European wide collaboration with patient groups 
  •  Cross border meetings to stimulate dialogue 

Gened was based in Manchester, UK

 

EUPATI

European Patients’ Academy on Therapeutic Innovation (EUPATI) is an Innovative Medicines Initiative joint undertaking between the European Union and the European Federation of Pharmaceutical Industries and Associations. EUPATI is a patient-driven initiative to change the landscape in the EU by increasing the capacities and capabilities of well-informed patients to be effective advocates and advisors in medicines development. The project was launched in February 2012 and over the next 5 years it will work to create educational modules on all aspects of the development of new medicines. 

EUPATI will make a substantial and measurable difference to patients, providing the tools and the knowledge for their meaningful involvement and empowerment  in pharmaceutical innovation, safety of medicines and access to treatments. It will inform the lay and hard to reach patient community, raising public awareness of the development of new treatments.

Educational modules will be developed for the following areas:
1. Medicines development process from research to approval 
2. Personalized and predictive medicine. 
3. Drug safety and risk/benefit assessment of medicines 
4. Pharmaco-economics, health economics and health technology assessment. 
5. Design and objectives of clinical trials (& roles of stakeholders)
6. Patients roles & responsibilities in innovative medicines development

For more information, please visit the website of The European Patients Academy  (EUPATI) 

PatientPartner

The aim of this project was to identify the patients’ needs for partnership in the clinical trials context. Moreover, the project lead to a well-organised and sustainable communication platform and guidelines, to enable the mutual beneficial interactions between patients and clinical trial professionals. 

The inventory of the existing views, needs, practices and experiences of patients, formed the basis of the PatientPartner project. This inventory consisted of literature reviews, interviews with patient organisations, opinion leaders and other clinical trial stakeholders as well as a European survey on patient involvement in clinical trials to identify good practices.  The results of this inventory formed the basis of the subsequent workshop series.

These workshops were the venue for dialogue between patient organisations, pharmaceutical companies and researchers, on patient involvement in the clinical trials’ context. As a result of this dialogue, PatientPartner formed recommendations as to how patient organisations can proceed to become more equal partners in clinical trials and clinical research. As a means towards patient partnerships with the stakeholders, the project gave rise to a facilitating structure that empowers, enables and mobilises European patient organisations to interact with the other European and international stakeholders in clinical trials.

This virtual network called the European Network of Patients Partnering in Clinical Research (ENPCR) aimed to empower patient organisations in their role as partners in clinical trials and was a one shop stop for other stakeholders to get in touch with European patient organisations for advice on, or participation in, clinical research.  The results of the project were widely disseminated during the last year of the project. A patient information guide and a guide for sponsors and researchers were also developed to help give rise to more effective partnerships in clinical trials and clinical research. In addition, recommendations that were made by the joined stakeholders during the workshops were collated in a document circulated to policy makers (and the broader public via the media, conferences etc.)

GENCODYS

Mutations in about 400 different genes have been associated with Cognitive Disorders (CD), such as autism, neurodegenerative disorders, and psychiatric disorders. Whereas CD collectively impose a major medical and socio‚Äźeconomical problem, there are no systematic studies that aim to provide insight into common pathogenic mechanisms in CD. The GENCODYS consortium proposes a systems biology approach, with a focus on mental retardation and autism, to reveal the common molecular and cellular mechanisms leading to cognitive impairment.
As a partner in this consortium, EGAN will stimulate, facilitate and organise the interaction between the scientific partners in GENCODYS and patient organisations. The GENCODYS consortium is funded by the European Union under the 7th framework program.

EuroGenGuide

EU FP6 Project on patient particpation in (genetic) data and biobanking. development of protocols for both research participants and researchers. 

NEPHIRD

A European Network for epidemiological and public health data collection on rare diseases
Nephird was a trans national project and providing ground for experience sharing and opinion exchange amongst experts on the subject. The project aimed at better availability of health services for rare disorders, setting up a system for the monitoring of selected rare disorders and addressing resources for research. Nephird was based in Rome, Italy.