Table Of Content. Outputs... 8

Transcription

1 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 v Praze, 1. lekarska fakulta... 5 Hospital de Sant Joan de Déu... 5 Associazione Italiana per la Sindrome di Emiplegia Alternante Onlus... 5 IRCCS E.MEDEA Ass.ne La Nostra Famiglia... 5 University Medical Centre Ljubljana, Children Hospital... 5 University of Bologna... 5 Good Clinical Practice Alliance... 5 Universitätsklinikum Heidelberg... 5 Leiden University Medical Center (AZL)... 5 : European Organisation for Rare Diseases... 5 European Network for Research on Alternating Hemiplegia... 5 Outputs... 8 Electronic Newsletter... 8 Capacity Building Workshop for Patient Networks AHC and Narcolepsy... 8 Extended Network meeting Agenda, List of Participants and report... 8 Final report - Final report... 8 Guidelines EU Best Practices in Ethics and GCP for Networks and registries... 8 Guidelines diseases early diagnosis and management... 8 Interim report 1 - Interim report Interim report 2 - Interim report List of publications on the project and its results... 8 Mailing lists for childhood neurological paroxysmal diseases... 8 Network First Meeting & First Meeting European Patient Networks on AHC and Narcolepsy... 8 Questionnaires for Survey among patients on their real life needs... 8 Questionnaires for data collection... 8 Report on the Survey related to Patient registries... 8 Report on the Workshop Best practices Patient Registries... 8 Report on the training Course on Best practices Patient Registries... 8 Reports on the Surveys among Patient Networks... 8 Website... 8 Page 1/12

2 European Network of Reference for Rare Pediatric Neurological Diseases JA GPSD [705038] START DATE: 24/04/2008 END DATE: 24/12/2011 DURATION: 44 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, Patients registries, Rare diseases and disorders PORTFOLIO: Rare diseases Page 2/12

3 SUMMARY General objectives NEUROPED will focus on a number of such conditions, among which Alternating Hemiplegia of Childhood (AHC), Narcolepsy and Rare Surgically Treatable Epileptic Syndromes ( RSTES) to include Tuberous Sclerosis; Sturge- Weber; Hypothalamic hamartoma, Landau- Kleffner syndrome and Rasmussen`s encephalitis. Strategic relevance and contribution to the public health programme The European Reference Network for Rare Pediatric Neurological Diseases will aim at developing strategies for information exchange for responding to non-communicable health threats. It specifically addresses the needs of patients and health professionals of validated information on these diseases; of early and correct diagnosis; of gaining new knowledge into these diseases as well as for developing and timely access to new therapeutic interventions. Methods and means An international team of 13 partners from 9 European countries, experienced in working together, will attempt to systematically network, collaborate and involve a large number of partners to achieve the project objectives: -Establish a European Reference Network on Rare Nervous System Disorders in Children; -Integrate Patients in the European Network; Identify main research, health care and social needs per each of selected diseases; -Develop audited guidelines on diseases of rare nervous system in children with paroxysmal attacks; -Build European-wide patient Registries for prospective studies on AHC, Narcolepsy and RSTES; -Identify specific ethical issues and Best Practice related to field, the Network and the use of Patient registries; -Spread the Network expertise throughout Europe. Expected outcomes period Page 3/12

4 NEUROPED will run for three years and will aim to contribute to reshaping this field by gathering and involving all stakeholders. It expects to have a positive impact for lives of people affected by these conditions. Page 4/12

5 COORDINATOR, LEADER CONTACT AND PARTNERS COORDINATOR () 3 Quai des Celestins Lyon Cedex 2 France Project leader contact Name: Arzimanoglou Alexis alexis.arzimanoglou@fondation-idee.fr Phone: PARTNERS University College London Street: Wolfson Centre, Mecklenburgh Square City: London Country: United Kingdom Univerzita Karlova v Praze, 1. lekarska fakulta Street: Ovocny trh 5 City: Praha 1 Country: Czech Republic Hospital de Sant Joan de Déu Street: Ps Sant Joan de Déu 2 City: Esplugues de LL. (Barcelona) Country: Spain Associazione Italiana per la Sindrome di Emiplegia Alternante Onlus Page 5/12

6 Street: Via Sernovella, 37 City: Verderio Superiore (LC) Country: Italy IRCCS E.MEDEA Ass.ne La Nostra Famiglia Street: Via Don Luigi Monza, 20 City: Bosisio Parini (Lecco) Country: Italy University Medical Centre Ljubljana, Children Hospital Street: Zaloska Cesta 2 City: Ljubljana Country: Slovenia University of Bologna Street: Via Ugo Foscolo 7 City: Bologna Country: Italy Good Clinical Practice Alliance Street: Schoolbergenstraat 47 City: Kessel-Lo Country: Belgium Universitätsklinikum Heidelberg Street: Im Neuenheimer Feld 672 City: Heidelberg Country: Germany Leiden University Medical Center (AZL) Page 6/12

7 Street: Albinusdreef 2 City: Leiden Country: Netherlands : European Organisation for Rare Diseases Street: Plateforme Maladies Rares 102, rue Didot City: Paris Country: France European Network for Research on Alternating Hemiplegia Street: Tivoligasse 70/10 City: Vienna Country: Austria Page 7/12

8 OUTPUTS Electronic Newsletter d_ _electronic_newsletter.pdf Capacity Building Workshop for Patient Networks AHC and Narcolepsy ed_ _capacity_building_workshop_for_patient_networks_ahc_and_nar colepsy_wp5.pdf Extended Network meeting Agenda, List of Participants and report d_ _extended_network_meeting_agenda_list_of_participants_and_rep ortwp4.pdf Final report - Final report Page 8/12

9 Guidelines EU Best Practices in Ethics and GCP for Networks and registries ed_ _guidelines_eu_best_practices_in_ethics_and_gcp_for_networks_ and_registries_wp9.pdf Guidelines diseases early diagnosis and management ed_ _guidelines_diseases_early_diagnosis_and_management_wp8.pdf Interim report 1 - Interim report 1 Interim report 2 - Interim report 2 List of publications on the project and its results Page 9/12

10 d_ _list_of_publications_on_the_project and_its_results.pdf Mailing lists for childhood neurological paroxysmal diseases ed_ _mailing_lists_for_childhood_neurological_paroxysmal_diseasesw p5.pdf Network First Meeting & First Meeting European Patient Networks on AHC and Narcolepsy d12_ne uroped_ _network_first_meeting_wp4 first_meeting_european_patie nt_networks_on_ahc_and_narcolepsy_wp5.pdf Questionnaires for Survey among patients on their real life needs ed_ _questionnaires_for_survey_among_patients_on_their_real_life_n eeds_wp6.pdf Questionnaires for data collection Page 10/12

11 ed_ _questionnaires_for_data_collectionwp_6_.pdf Report on the Survey related to Patient registries ed_ _report_on_the_survey_related_to_patient_registries_wp9.pdf Report on the Workshop Best practices Patient Registries ed_ _report_on_the_workshop_best_practices_patient_registries_wp5 _and_wp9.pdf Report on the training Course on Best practices Patient Registries ed_ _report_on_the_training_course_on_best_practices_patient_regist ries_wp5_and_wp9.pdf Reports on the Surveys among Patient Page 11/12

12 Powered by TCPDF ( Networks ed_ _reports_on_the_surveys_among_patient_networks_wp8.pdf Website Page 12/12