PATIENTPARTNER

Identifying the Needs for Patients Partnering in Clinical Research

Coordinatore	VERENIGING SAMENWERKENDE OUDER- EN PATIENTENORGANISATIES    more  Organization address address: Vredehofstraat 31 city: SOEST postcode: 3761HA contact info Titolo: Dr. Nome: Cor Cognome: Oosterwijk Email: send email Telefono: 31356034013 Fax: 31356027440
Nazionalità Coordinatore	Netherlands [NL]
Sito del progetto	http://www.patientpartner-europe.eu/
Totale costo	1˙009˙808 €
EC contributo	905˙177 €
Programma	FP7-HEALTH Specific Programme "Cooperation": Health
Code Call	FP7-HEALTH-2007-A
Funding Scheme	CSA-CA
Anno di inizio	2008
Periodo (anno-mese-giorno)	2008-05-01   -   2011-04-30

 Partecipanti

#	participant	country	role	EC contrib. [€]
1	VERENIGING SAMENWERKENDE OUDER- EN PATIENTENORGANISATIES  Organization address address: Vredehofstraat 31 city: SOEST postcode: 3761HA contact info Titolo: Dr. Nome: Cor Cognome: Oosterwijk Email: send email Telefono: 31356034013 Fax: 31356027440	NL (SOEST)	coordinator	0.00
2	EUROPEAN FORUM FOR GOOD CLINICAL PRACTICE  Organization address address: RUE DE WASHINGTON 40 city: BRUSSELS postcode: 1050 contact info Titolo: Dr. Nome: Ingrid Cognome: Klingmann Email: send email Telefono: +32 2 732 87 83 Fax: +32 2 503 31 08	BE (BRUSSELS)	participant	0.00
3	EUROPEAN GENETIC ALLIANCES' NETWORK  Organization address address: AVENUE LOUISE 287 city: BRUSSELS postcode: 1050 contact info Titolo: Ms. Nome: Thea Cognome: Van Veldhuizen Email: send email Telefono: +31 35 6034040 Fax: +31 35 6027440	BE (BRUSSELS)	participant	0.00
4	GENETIC ALLIANCE UK LTD  Organization address address: UNIT 4D LEROY HOUSE , ESSEX ROAD 436 city: LONDON postcode: N1 3QP contact info Titolo: Dr. Nome: Alastair Cognome: Kent Email: send email Telefono: +44 2077043141 Fax: +44 2073591447	UK (LONDON)	participant	0.00

Mappa

 Word cloud

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 Obiettivo del progetto (Objective)

'The aim of this 3-year Coordination Action will be to identify the patients’ needs for partnership in the clinical trials context. Moreover, this project will lead to both a well-organized and sustainable communication platform and guidelines to enable the mutual beneficial interactions between patients and clinical trials professionals. This aim will be realized through: I) Interviews, addressing patients (-organizations) that will identify preliminary needs in the clinical trials context from a patients’ perspective. These data are complemented with literature reviews and descriptions of best practices. The combined outcomes will be accessable on a centralized webbased database. II) Subsequent workshops addressing patients (and patient organizations), researchers and scientists, biopharmaceutical companies, regulators and other stakeholders in the clinical trials context. In these workshops, the conclusions from the interviews, literature studies and best practices will be challenged to draw ‘European’ viewpoints and consensus. On the specific website, attendees will be able to consult the outcomes from both the investigational phase and previous workshops. III) The establishment of the European Network of Patients partnering for Clinical Research (EN-PCR). Initially, EN-PCR will be responsible for addressing the high priority issues in this project: paediatric clinical trials, patient registries and biobanks, the Innovative Medicines Initiative (IMI) and ethical issues. Later on, EN-PCR will guarantee the sustainability of this project, being a permanent structure with a bi-directional purpose, both empowering patients and functioning as a one-stop shop for academic and biopharmaceutical research. IV) Further dissemination of the project results will be achieved by a Patient Guide for patient organizations, an Investigator Guide for organizers and sponsors of clinical trials, a List of Recommendations for regulators and a thematic website. The consortium will provide continued support to both EN-PCR and the PatientPartner website after this Coordination Action has ended. This project is implemented by key European and national patient network organisations, and a forum for Good Clinical Practice. It concurrently supports patient-centered clinical research and European biophamaceutical competiveness.'