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1 Table Of Content The PRES European Network of Registries for Autoinflammatoy Diseases in childhood Summary... 3 Coordinator, Leader contact and partners... 5 Assistance publique Hôpitaux de Paris-Centre Hospitalo-Universitaire de Necker- Enfants Malades - APHP-CHU Necker... 5 Vivantes Netzwerk für Gesundheit GmbH - VIVANTES (from 08/10/2010)... 5 Ziekenhuisshool Universitaire Ziekenhuizen K U Leuven VZW - UZLeuven... 5 Assistance publique Hôpitaux de Paris-Centre Hospitalo-Universitaire de Bicêtre - APHP- CHU de Bicêtre... 5 Bambino Gesù Pediatric Hospital, Scientific Institute - OPBG... 5 University Medical Center Utrecht - UMCU... 5 University of Würzburg - UW (until 31/05/2009)... 5 University College London - UCL... 5 Hacettepe University Faculty of Medicine - HUFM... 5 Outputs... 8 D 2 Informative webpages on Autoinflammatory diseases... 8 D1 Permanent network of registries on Autoinflammatory diseases in children... 8 D3 State of the art on the treatment of Autoinflammatory diseases... 8 Final report - Final report... 8 Interim report 1 - Interim report Website... 8 Page 1/9
2 The PRES European Network of Registries for Autoinflammatoy Diseases in childhood. JA GPSD [705038] START DATE: 01/07/2008 END DATE: 01/07/2011 DURATION: 36 month(s) CURRENT STATUS: Finalised PROGRAMME TITLE: First Programme of Community action in the field of public health ( ) PROGRAMME PRIORITY: - CALL: Health Information (Hi 2007) TOPIC: Developing strategies for information exchange and responding to noncommunicable health threats EC CONTRIBUTION: EUR KEYWORDS: Children, Diagnostic, Health system, Rare diseases and disorders, Treatment PORTFOLIO: Healthcare, Rare diseases Page 2/9
3 SUMMARY General objectives The general aim of this project is to build a network on autoinflammatory diseases in childhood. In particular the project would like to complete and integrate already existing initiatives in this field with the following actions: - sensitize paediatricians and paediatric rheumatologists to the prompt recognition of these diseases, - give a proper information among families affected by these conditions, - increase the knowledge on the clinical presentation, response to treatment and complications of theses rare disorders. Strategic relevance and contribution to the public health programme The project will be devoted to development of strategies and mechanisms for exchange information among people affected by rare diseases and promotion of better epidemiological studies, codification, classification and definition. Moreover this project is aimed to support European networks of references for rare diseases in order to establish guidelines for best practice on treatment and to share knowledge on these diseases. Methods and means The following instruments will be used: - a web-based survey on the prevalence of diagnosed or suspected autoinflammatory diseases among all European Paediatric Rheumatology Centers, - international registries for all those diseases lacking of a web-based method for data collection, - survey on the efficacy of treatment in these disorders and elaboration of outcome measures for possible future therapeutic trials, - informative webpages on each disorders for patients and physicians Expected outcomes period The project will contribute to better exchange of information on autoinflammatory diseases among the paediatric rheumatology centres dealing with these disorders and other already existing initiative on rare diseases. It will improve the early diagnosis and the global management of the autoinflammatory syndromes and to disseminate proper information to paediatricians and affected families. Page 3/9
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5 COORDINATOR, LEADER CONTACT AND PARTNERS COORDINATOR (Istituto Giannina Gaslini IRCCS - IGG) Largo G. Gaslini Genova Italy Project leader contact Name: Gattorno Marco marcogattorno@ospedale-gaslini.ge.it Phone: PARTNERS Assistance publique Hôpitaux de Paris-Centre Hospitalo- Universitaire de Necker-Enfants Malades - APHP-CHU Necker Street: 149 rue de Sèvres City: Paris Country: France Vivantes Netzwerk für Gesundheit GmbH - VIVANTES (from 08/10/2010) Street: Oranienburger Strasse 285 City: Berlin Country: Germany Ziekenhuisshool Universitaire Ziekenhuizen K U Leuven VZW - UZLeuven Street: Herestraat 49 City: 3000 Leuven Country: Belgium Page 5/9
6 Assistance publique Hôpitaux de Paris-Centre Hospitalo- Universitaire de Bicêtre - APHP-CHU de Bicêtre Street: 78 rue du Général Leclerc City: Le Kremlin Bicêtre Country: France Bambino Gesù Pediatric Hospital, Scientific Institute - OPBG Street: Piazza Sant Onofrio 4 City: Rome Country: Italy University Medical Center Utrecht - UMCU Street: Lundlaan 6 City: 3584 CX Utrecht Country: Netherlands University of Würzburg - UW (until 31/05/2009) Street: Josef-Schneider-Str.2 City: Würzburg Country: Germany University College London - UCL Street: Great Ormond Street City: WC1E 6BT London Country: United Kingdom Hacettepe University Faculty of Medicine - HUFM Street: Sihhiye City: Ankara Country: Turkey Page 6/9
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8 OUTPUTS D 2 Informative webpages on Autoinflammatory diseases s_on_autoinflammatory_diseases.pdf D1 Permanent network of registries on Autoinflammatory diseases in children _familial_mediterranean_fever.mht D3 State of the art on the treatment of Autoinflammatory diseases r_received_2010_03_31.doc Final report - Final report Page 8/9
9 Powered by TCPDF ( Interim report 1 - Interim report 1 Website Page 9/9
Table Of Content. A European Network of Centres of Reference for Dysmorphology... 2 Summary... 3 Coordinator, Leader contact and partners...
Table Of Content A European Network of Centres of Reference for Dysmorphology... 2 Summary... 3 Coordinator, Leader contact and partners... 4 The Children's Memorial Health Institute IPCZD... 4 Katholieke
Table Of Content. Defining best practices in palliative care in Europe... 2 Summary... 3 Coordinator, Leader contact and partners Outputs...
Table Of Content Defining best practices in palliative care in Europe... 2 Summary... 3 Coordinator, Leader contact and partners... 4 The University of Sheffield... 4 Fundacio Privat Institut d'investgadó
Table Of Content. Outputs... 7
Table Of Content Better control in paediatric and adolescent diabetes in the EU: working to create Centres of Reference... 2 Summary... 3 Coordinator, Leader contact and partners... 4 Hannover Medical
Table Of Content. Outputs... 7
Table Of Content National policies for EHR implementation in the European area: social and organizational issues... 2 Summary... 3 Coordinator, Leader contact and partners... 5 Foundation for Research
Table Of Content. Outputs... 8
Table Of Content European registry and network for Intoxication type Metabolic Diseases... 2 Summary... 3 Coordinator, Leader contact and partners... 5 Assistance Publique-Hôpitaux de Paris, Hôpital Necker-Enfants
Table Of Content. Outputs... 9
Table Of Content European Expert Paediatric Oncology Reference Network for Diagnostics and Treatment... 2 Summary... 3 Coordinator, Leader contact and partners... 5 Klinikum Dortmund ggmbh... 5 Uniwersytet
Table Of Content. Outputs... 8
Table Of Content European Network of Reference for Rare Pediatric Neurological Diseases... 2 Summary... 3 Coordinator, Leader contact and partners... 5 University College London... 5 Univerzita Karlova
Table Of Content. Information network on rare cancers... 2 Summary... 3 Coordinator, Leader contact and partners Outputs...
Table Of Content Information network on rare cancers... 2 Summary... 3 Coordinator, Leader contact and partners... 5 National University Specialised Hospital for Active Treatment in Oncology - NOH... 5
Table Of Content. Elderly Network on Ageing and Health... 2 Summary... 3 Coordinator, Leader contact and partners Outputs...
Table Of Content Elderly Network on Ageing and Health... 2 Summary... 3 Coordinator, Leader contact and partners... 5 Istituto Nazionale per lo Studio e la Cura dei Tumori (INSCT)... 5 Deutsches Institut
Table Of Content. Outputs... 9
Table Of Content A european pilot network of reference centres in refractory epilepsy and epilepsy surgery... 2 Summary... 3 Coordinator, Leader contact and partners... 6 UNIVERSITAIR MEDISCH CENTRUM UTRECHT...
Table Of Content. EUROCHIP-III "Common Actions"... 2 Summary... 3 Coordinator, Leader contact and partners Outputs... 7
Table Of Content EUROCHIP-III "Common Actions"... 2 Summary... 3 Coordinator, Leader contact and partners... 5 Integraal Kankercentrum Noord-Nederland - IKN... 5 Suomen Syöpäyhdistys R.Y. (Cancer Society
Table Of Content. Smoking in movies: Impact on European youth and policy options... 2 Summary... 3 Coordinator, Leader contact and partners...
Table Of Content Smoking in movies: Impact on European youth and policy options... 2 Summary... 3 Coordinator, Leader contact and partners... 4 Medical Research Council (MRC)... 4 Radboud University Nijmegen...
Table Of Content. Outputs... 7
Table Of Content European Cooperation on Development and Implementation of Cancer Screening and Prevention Guidelines... 2 Summary... 3 Coordinator, Leader contact and partners... 5 Scientific Institute
Table Of Content. Outputs... 7
Table Of Content Using Multidimensional Prognostic Indices(MPI)to improve costeffectiveness of interventions in multimorbid frail older persons.... 2 Summary... 3 Coordinator, Leader contact and partners...
Table Of Content. Anti Stigma Programme: European Network... 2 Summary... 3 Coordinator, Leader contact and partners Outputs...
Table Of Content Anti Stigma Programme: European Network... 2 Summary... 3 Coordinator, Leader contact and partners... 5 Associação para o Estudo e Integração Psicossocial - AEIPS... 5 UNIVERSITY MENTAL
Table Of Content. The European Influenza Surveillance Scheme... 2 Summary... 3 Coordinator, Leader contact and partners Outputs...
Table Of Content The European Influenza Surveillance Scheme... 2 Summary... 3 Coordinator, Leader contact and partners... 6 Institut Pasteur... 6 Health Division... 6 Nphs Communicable Disease Surveillance
Table Of Content. European Prevention Initiative for Dermatological Malignancies... 2 Summary... 3 Coordinator, Leader contact and partners...
Table Of Content European Prevention Initiative for Dermatological Malignancies... 2 Summary... 3 Coordinator, Leader contact and partners... 4 Sir Paul Boffa Hospital - SPBH... 4 Aristotle University
Table Of Content. Invasive Bacterial Infections Surveillance in the European Union... 2 Summary... 3 Coordinator, Leader contact and partners...
Table Of Content Invasive Bacterial Infections Surveillance in the European Union... 2 Summary... 3 Coordinator, Leader contact and partners... 5 National School of Public Health... 5 National Institute
Table Of Content. Outputs... 7
Table Of Content Surveillance System: Occurrence of Urinary Incontinence in Women as a Consequence of Inefficient or Inappropriate Obstetric Care... 2 Summary... 3 Coordinator, Leader contact and partners...
Table Of Content. Outputs... 9
Table Of Content Development & Implementation of a European Guideline and training standards for Diabetes Prevention... 2 Summary... 3 Coordinator, Leader contact and partners... 4 University of Oslo...
Table Of Content. European Surveillance of Sexually Transmitted Infections... 2 Summary... 3 Coordinator, Leader contact and partners...
Table Of Content European Surveillance of Sexually Transmitted Infections... 2 Summary... 3 Coordinator, Leader contact and partners... 5 Department of Health and Children/ East Coast Area Health Board...
Table Of Content. European Organisation for Rare Diseases... 2 Summary... 3 Coordinator, Leader contact and partners... 6 Outputs...
Table Of Content European Organisation for Rare Diseases... 2 Summary... 3 Coordinator, Leader contact and partners... 6 Outputs... 7 D04 - Electronic Newsletter (EN)... 7 D01 - Activity Report EURORDIS
Table Of Content. European Collaboration on Dementia... 2 Summary... 3 Coordinator, Leader contact and partners Outputs...
Table Of Content European Collaboration on Dementia... 2 Summary... 3 Coordinator, Leader contact and partners... 5 Associacao Portuguesa de Familiares e Amigos de Doentes de Alzheimer... 5 Universiteit
Table Of Content. Outputs... 8
Table Of Content Coordinating a European initiative among national organizations for organ transplantation... 2 Summary... 3 Coordinator, Leader contact and partners... 5 Pauls Stradins Clinical University
Table Of Content. Monitoring Suicidal Behaviour in Europe... 2 Summary... 3 Coordinator, Leader contact and partners Outputs...
Table Of Content Monitoring Suicidal Behaviour in Europe... 2 Summary... 3 Coordinator, Leader contact and partners... 5 University Psychiatric Hospital, Centre for Mental Health... 5 Psychiatry Ambulatory
Table Of Content. European surveillance of travel associated legionnaires' disease... 2 Summary... 3 Coordinator, Leader contact and partners...
Table Of Content European surveillance of travel associated legionnaires' disease... 2 Summary... 3 Coordinator, Leader contact and partners... 5 Statens Serum Institute... 5 National Environmental Health
Table Of Content. Annex 1: Conference report... 7 Annual project reports (URL)... 7 Original Full Information (Dec 2008)... 7.
Table Of Content Alcohol Policy Network in the Context of a Larger Europe: Bridging the Gap... 2 Summary... 3 Coordinator, Leader contact and partners... 6 Outputs... 7 Annex 1: Conference report... 7
Table Of Content. Outputs... 8
Table Of Content Developing a training and resource package for improving the sexual and reproductive health of people living with HIV/AIDS... 3 Summary... 4 Coordinator, Leader contact and partners...
Table Of Content. Standardizing Measurement of Alcohol Related Troubles... 2 Summary... 3 Coordinator, Leader contact and partners Outputs...
Table Of Content Standardizing Measurement of Alcohol Related Troubles... 2 Summary... 3 Coordinator, Leader contact and partners... 4 Fundació Clínic per a la Recerca Biomèdica - FCRB... 4 Generalitat
Table Of Content. Page 1/7
Table Of Content Closing the Gap - Reducing Premature Mortality. Baseline for Monitoring Health Evolution Following Enlargement... 2 Summary... 3 Coordinator, Leader contact and partners... 5 Outputs...
Table Of Content. Healthy Ageing Supported by Internet and the Community... 2 Summary... 3 Coordinator, Leader contact and partners Outputs...
Table Of Content Healthy Ageing Supported by Internet and the Community... 2 Summary... 3 Coordinator, Leader contact and partners... 5 Debreceni Egyetem, Tudományegyetemi Karok... 5 Universidad de Castilla-
Operation of the European NGO Network for Smoking Prevention... 2 Summary... 3 Coordinator, Leader contact and partners... 5
Table Of Content Operation of the European NGO Network for Smoking Prevention... 2 Summary... 3 Coordinator, Leader contact and partners... 5 A.N.P.AS. Associazione Nazionale Pubbliche Assistenze... 5
Table Of Content. EUropean Best Information through Regional Outcomes in Diabetes... 2 Summary... 3 Coordinator, Leader contact and partners...
Table Of Content EUropean Best Information through Regional Outcomes in Diabetes... 2 Summary... 3 Coordinator, Leader contact and partners... 5 The Adelaide and Meath Hospital Dublin, incorporating the
Table Of Content Active Ageing with Type 2 Diabetes as Model for the Development and Implementation of Innovative Chronic Care Management in Europe
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Table Of Content. D05 - Agreed-upon plan for the implementation and evaluation of UHC2.0 for
Table Of Content Urban Health Centre 2.0: Integrated health and social care pathways, early detection of frailty, management of polypharmacy and prevention of falls for active and healthy ageing in European
Table Of Content. European Surveillance of Congenital Anomalies (Phase 3)... 3 Summary... 4 Coordinator, Leader contact and partners...
Table Of Content European Surveillance of Congenital Anomalies (Phase 3)... 3 Summary... 4 Coordinator, Leader contact and partners... 5 Registry of Congenital Anomalies... 5 CNR Institute of Clinical
Table Of Content. OTH-01-5 years AIDS Action Europe (RU)... 6 OTH-02-5 years AIDS Action Europe (EN) Page 1/9
Table Of Content AIDS Action Europe: Public Policy Dialogue and Linking & Learning... 2 Summary... 3 Coordinator, Leader contact and partners... 5 Outputs... 6 D01-01 - E-news AIDS Action Europe (EN)...
Table Of Content. Outputs... 7
Table Of Content An EU Rare Diseases Registry for Wolfram Syndrome, Alstrom Syndrome and Bardet Biedl Syndrome... 2 Summary... 3 Coordinator, Leader contact and partners... 5 Medical University of Lodz...
Table Of Content. Page 1/14
Table Of Content Support to EATG in promoting UA in the New Member States and New Neighbourhood countries... 2 Summary... 3 Coordinator, Leader contact and partners... 5 Outputs... 6 D09-03 - EATG Newsletter
Table Of Content. Health Impacts of Airborne ALergen Information NEtwork... 2 Summary... 3 Coordinator, Leader contact and partners Outputs...
Table Of Content Health Impacts of Airborne ALergen Information NEtwork... 2 Summary... 3 Coordinator, Leader contact and partners... 4 Medical University of Vienna, ENTDepartment... 4 Siauliai University...
Table Of Content. Outputs... 7
Table Of Content A framework for communicable disease surveillance, communication and training in Northern Europe, 2004-2006... 2 Summary... 3 Coordinator, Leader contact and partners... 5 Swedish Institute
Table Of Content. Democracy, Cities & Drugs II... 3 Summary... 4 Coordinator, Leader contact and partners Outputs... 9
Table Of Content Democracy, Cities & Drugs II... 3 Summary... 4 Coordinator, Leader contact and partners... 6 Kur-Und Gesundheitszentrum KNAPPENHOF (from 12/03/2010)... 6 EUROPEAN TREATMENT CENTRES FOR
Table Of Content. Outputs... 7
Table Of Content PEER-education-project for young drivers to prevent alcohol and drugs in connection with road use - Drive Clean! -... 2 Summary... 3 Coordinator, Leader contact and partners... 5 Kur-und
Table Of Content. Policy Action and Information for Rare Diseases in Europe... 2 Summary... 3 Coordinator, Leader contact and partners...
Table Of Content Policy Action and Information for Rare Diseases in Europe... 2 Summary... 3 Coordinator, Leader contact and partners... 6 Kontaktudvalget for Mindre Sygdoms-og handicapforeninger (KMS)...
Table Of Content. D Report on TB and HIV situation among vulnerable groups in the project area
Table Of Content TUBERCULOSIS EPIDEMIC AMONG VULNERABLE GROUPS... 3 Summary... 4 Coordinator, Leader contact and partners... 6 Сдружение "Доза обич"/ Dose of love Association... 6 Latvijas Tuberkulozes
Table Of Content. EURORDIS_FY Summary... 3 Coordinator, Leader contact and partners... 6 Outputs... 7
Table Of Content EURORDIS_FY2010... 2 Summary... 3 Coordinator, Leader contact and partners... 6 Outputs... 7 D04 - Electronic Newsletter and V.3 of EURORDIS website (EN)... 7 D01 - Activity Report OPERA
Table Of Content. Outputs... 8
Table Of Content Young and HIV: European network to arrange an innovative prevention campaign and to exchange good practices - experience in Europe"... 2 Summary... 3 Coordinator, Leader contact and partners...
Table Of Content. SSI_FY Summary... 3 Coordinator, Leader contact and partners... 7 Outputs... 8
Table Of Content SSI_FY2014... 2 Summary... 3 Coordinator, Leader contact and partners... 7 Outputs... 8 D01 - EuroMOMO system (EN)... 8 D02 - EuroMOMO website (EN)... 8 D03 - End of influenza season mortality
Table Of Content. Outputs... 12
Table Of Content A European Platform For Mental Health Promotion And Mental Disorder Prevention: Indicators, Interventions And Strategies... 2 Summary... 3 Coordinator, Leader contact and partners... 5
Table Of Content. Outputs... 10
Table Of Content MEANINGFUL HIV SURVEILLANCE AMONG MSM... 3 Summary... 4 Coordinator, Leader contact and partners... 6 Robert Koch Institute, Berlin... 6 National Institute of Infectious Diseases Prof.
Table Of Content. Outputs... 8
Table Of Content Expanding Network for Coordinated and Comprehensive Actions on HIV/AIDS Prevention among IDUs and Bridging Population... 2 Summary... 3 Coordinator, Leader contact and partners... 6 Tervise
rare diseases research through National Plans and Strategies
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Table Of Content. Outputs... 8
Table Of Content Operational knowledge to improve HIV early diagnosis and treatment among vulnerable groups in Europe... 2 Summary... 3 Coordinator, Leader contact and partners... 5 Društvo Kulturno, informacijsko
Table Of Content. Page 1/8
Table Of Content 22nd Conference: Changing perceptions, practice and policy... 2 Summary... 3 Coordinator, Leader contact and partners... 6 Outputs... 7 D04-00 - Programme and book of abstracts (EN)...
Table Of Content. Outputs... 7
Table Of Content CAPACITY BUILDING IN HIV/SYPHILIS PREVALENCE ESTIMATION USING NON-INVASIVE METHODS AMONG MSM IN SOUTHERN AND EASTERN EUROPE... 2 Summary... 3 Coordinator, Leader contact and partners...
Table Of Content. Outputs... 9
Table Of Content HIV/AIDS and STI-prevention, diagnostic and therapy in crossing border regions among the current and the new EC-outer borders... 2 Summary... 3 Coordinator, Leader contact and partners...
EPAG UPDATE. Lenja Wiehe. European Patient Advocacy Groups Manager, EURORDIS
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Table Of Content Highly active prevention: scale up HIV/AIDS/STI prevention, diagnostic and therapy across sectors and borders in CEE and SEE.... 2 Summary... 3 Coordinator, Leader contact and partners...
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Table Of Content Ten D by Night (Dark, Dance, Disco, Dose, Drugs, Drive, Danger, Damage, Disability, Death)... 3 Summary... 4 Coordinator, Leader contact and partners... 5 RIGA STRADINA UNIVERSITATE -
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Table Of Content First European Day of the Brain. Ageing, Stroke and Alzheimer s Disease-finding innovative solutions.... 2 Summary... 3 Coordinator, Leader contact and partners... 6 Outputs... 7 D01-01
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