Table Of Content. Single Hub and Access point for paediatric Rheumatology in Europe... 2 Summary... 3 Coordinator, Leader contact and partners...

Transcription

1 Table Of Content Single Hub and Access point for paediatric Rheumatology in Europe... 2 Summary... 3 Coordinator, Leader contact and partners... 5 Univerzita Karlova v Praze - CUNI... 5 Eberhard Karls Universität Tübingen - UKT... 5 Hospital Sant Joan de Déu - HSJD... 5 Istituto Giannina Gaslini... 5 Katholieke Universiteit Leuven - KUL... 5 Latvijas Universitāte - UL... 5 Assistance Publique-Hôpitaux de Paris - APHP... 5 Univerzitetni Klinični Center Ljubljana - UKCLJ... 5 Semmelweis Egyetem - SE... 5 University of Liverpool - UNILIV... 5 Outputs... 8 D01 - EC reports, evaluation plan, dissemination plan... 8 D02 - Website... 8 D03 - SHARE final conference... 8 D04 - SHARE final report... 8 D05 - Evaluation report... 8 D06 - Baseline of EU PRD care... 8 D07 - Literature review... 8 D08 - Best practices of PRD care... 8 D09 - Report on barriers in data and sample collection... 8 D10 - European Training Syllabus... 8 D11 - First interim report... 8 D12 - Second interim report... 8 Page 1/10

2 Single Hub and Access point for paediatric Rheumatology in Europe JA GPSD [705038] START DATE: 01/09/2012 END DATE: 01/01/2016 DURATION: 40 month(s) CURRENT STATUS: Finalised PROGRAMME TITLE: Second Programme of Community action in the Field of Health PROGRAMME PRIORITY: - CALL: Promote Health (Hp-2010) TOPIC: IMPROVE CITIZEN'S HEALTH SECURITY (HS-2011) EC CONTRIBUTION: EUR KEYWORDS: Collection of Best Practices, Health education, Healthcare, Rare diseases and disorders, Treatment PORTFOLIO: Rare diseases Page 2/10

3 SUMMARY General objectives The objective of SHARE is to improve the quality of care of patients suffering from PRD (i.e. JIA, JDM, SLE, APS, vasculitis and scleroderma) by means of: (I) Resolving the barriers between: (a) networks and projects, (b) PRD research teams, and (c) all actors involved in the itinerary from the conception of an idea or lead to the development of a new medical technology or drug and the treatment of patients; (II) Improving a patients access to relevant data/information about his/her disease; (III) Facilitating the exchange of ideas, results, data and best practices, and; (IV) Facilitating the implementation of results in training programs of health care professionals. Building on established networks (PReS/PRINTO), national registers and European projects, SHARE will have a considerable impact on the treatment and management of PRD by catalyzing progress in research, by harmonizing treatment, by improving the foothold of patients and by supporting regulatory and policy decisions. Strategic relevance and contribution to the public health programme As stated in the Council s Recommendations, rare diseases eminently call for an international approach because of their specificity, low prevalence and the high total number of people that are affected by a rare disease. SHARE will lay the foundations for progress in the field of PRD. The 3 main items that seriously hamper progression of care in PRD are differences in the treatment and management throughout Europe, the lack of sufficient and comparable data, and insufficient links between patients, their representatives and health care providers. The three gaps are the focus areas of SHARE. Top priority will given to the sustainability of the action, as continuity will be a prerequisite for success. SHARE will therefore be incorporated within the existing structure of the Pediatric Rheumatology European Society (PReS). Over the recent years PReS has expanded its organization both by an increase in the total number of memberships as in the number of countries that are represented. Methods and means (1) A survey will be performed amongst PRD healthcare providers in Europe to define country specific needs. (2) A literature overview and survey will be completed to indentify best practices for treatment. The available evidence will be graded, by organizing consensus meetings. (3) The PReS website will be updated to establish a network for data collection and analysis, to link existing networks, and to provide tools for interactive use of information. (4) Patients (patient societies) will be included in the expert groups to ensure a better foothold of patients in research and Page 3/10

4 treatment. (5) An analysis of ethical and legal issues surrounding data collection and procedures for informed consent will be performed in a literature study and survey to identify best practices. The results will be discussed in expert meetings. (6) Based on the results of objectives 1, 2 and 5, a proposal will be drawn up for inclusion of the results in the existing training programme of PReS and its members. Expected outcomes period (1) Establishing a European Reference Network on PRD and a framework for exchanging information, for standards on data and sample collection, and for best practices on PRD treatment that will allow for a better classification of PRD, determining the burden of disease, evaluating diagnostic and therapeutic protocols and executing case-control study and clinical trials (2) Establishing minimal standards of care in each European country based on the identification of best practices in PRD treatment. (3) Improving the foothold of patients in PRD research and treatment by providing for an information network for patients and doctors where: (a) patients have access to proper information and to patient societies, (b) patients are linked to the healthcare providers, (c) and healthcare providers have better access to specific patient groups. (4) Supporting regulatory decisions and facilitating policy decisions through systematic collection, analysis and interpretation of data. Page 4/10

5 COORDINATOR, LEADER CONTACT AND PARTNERS COORDINATOR (Universitair Medisch Centrum Utrecht - UMCU) Lundlaan EA Utrecht Netherlands Project leader contact Name: Wulffraat Nico n.m.wulffraat@umcutrecht.nl Phone: PARTNERS Univerzita Karlova v Praze - CUNI Street: Ovocný trh 3/5 City: Prague 1 Country: Czech Republic Eberhard Karls Universität Tübingen - UKT Street: Hoppe-Seyler-Strasse 1 City: Tübingen Country: Germany Hospital Sant Joan de Déu - HSJD Street: Passeig Sant Joan de Déu, 2 City: Esplugues de Llobregat (Barcelona) Country: Spain Page 5/10

6 Istituto Giannina Gaslini Street: LARGO GASLINI 5 City: IT Genova Country: Italy Katholieke Universiteit Leuven - KUL Street: Herestraat 49 City: 3000 Leuven Country: Belgium Latvijas Universitāte - UL Street: Raina blvd.19 City: 1586 Riga Country: Latvia Assistance Publique-Hôpitaux de Paris - APHP Street: 3 Avenue Victoria City: Paris Country: France Univerzitetni Klinični Center Ljubljana - UKCLJ Street: Zaloška 2 City: 1525 Ljubljana Country: Slovenia Semmelweis Egyetem - SE Street: Tűzoltó u. 7-9 City: 1094 Budapest Country: Hungary Page 6/10

7 University of Liverpool - UNILIV Street: 765 Brownlow Hill, The Foundation Building City: L697ZX Liverpool Country: United Kingdom Page 7/10

8 OUTPUTS D01 - EC reports, evaluation plan, dissemination plan D02 - Website D03 - SHARE final conference D04 - SHARE final report D05 - Evaluation report D06 - Baseline of EU PRD care Page 8/10

9 D07 - Literature review D08 - Best practices of PRD care D09 - Report on barriers in data and sample collection D10 - European Training Syllabus D11 - First interim report Page 9/10

10 Powered by TCPDF ( D12 - Second interim report Page 10/10