Objectif OPTIMISTIC is a proposal for a European collaborative project of doctors, scientists, relevant stakeholders (TREAT-NMD, patient organizations) and SMEs with the aim to improve clinical practice for patients suffering from a rare, inherited, and neglected disease, myotonic dystrophy type 1 (DM1). It is one of the most variable human diseases with complex, multi-systemic and progressively worsening clinical manifestations. Despite the huge impact of DM1 on the daily life of both patients and their family members, DM1 patients fail to receive the quality of healthcare that is available as they are not assertive users of the health care system.There is no cure for DM1. The aim of treatment is to relieve impairments, reduce limitations and support participation in everyday activities. Based on our DM1-specific model which shows that physical activity and experienced fatigue are main determinants of DM1 health status (Kalkman 2007), OPTIMISTIC investigates the effect of cognitive behavioural therapy (CBT) in combination with exercise training to improve functional capacity and to stimulate an active lifestyle.OPTIMISTIC compares the outcome of a treatment regimen with regular management in a multi-centre, assessor-blinded, randomized controlled trial, designed to 1) result in evidence-based clinical guidelines on exercise and cognitive behavioural therapy in DM1, 2) capture clinically meaningful changes in existing and novel outcome measures, and 3) identify both individual and composite biomarkers as surrogate treatment outcome measures that are reflective of the disease state.There is an urgent need for an European clinical trial infrastructure for DM1. High prioritization of this is required to enhance the speed of clinical development of new putative DM1 therapeutics approaching the market. OPTIMISTIC will provide this and safeguard the rapid uptake of the developed clinical guidelines ensuring improvements in DM1 care and quality of life. Programme(s) FP7-HEALTH - Specific Programme "Cooperation": Health Thème(s) HEALTH.2012.2.4.4-2 - Observational trials in rare diseases Appel à propositions FP7-HEALTH-2012-INNOVATION-1 Voir d’autres projets de cet appel Régime de financement CP-FP - Small or medium-scale focused research project Coordinateur STICHTING RADBOUD UNIVERSITEIT Contribution de l’UE € 1 344 550,40 Adresse HOUTLAAN 4 6525 XZ Nijmegen Pays-Bas Voir sur la carte Région Oost-Nederland Gelderland Arnhem/Nijmegen Type d’activité Higher or Secondary Education Establishments Contact administratif Maarten Van Langen (Mr.) Liens Contacter l’organisation Opens in new window Site web Opens in new window Coût total Aucune donnée Participants (8) Trier par ordre alphabétique Trier par contribution de l’UE Tout développer Tout réduire UNIVERSITY OF NEWCASTLE UPON TYNE Royaume-Uni Contribution de l’UE € 464 326,00 Adresse KINGS GATE NE1 7RU Newcastle Upon Tyne Voir sur la carte Région North East (England) Northumberland and Tyne and Wear Tyneside Type d’activité Higher or Secondary Education Establishments Contact administratif Airey Fiona (Mrs.) Liens Contacter l’organisation Opens in new window Site web Opens in new window Coût total Aucune donnée LUDWIG-MAXIMILIANS-UNIVERSITAET MUENCHEN Allemagne Contribution de l’UE € 263 200,80 Adresse GESCHWISTER SCHOLL PLATZ 1 80539 Muenchen Voir sur la carte Région Bayern Oberbayern München, Kreisfreie Stadt Type d’activité Higher or Secondary Education Establishments Contact administratif Benedikt Schoser (Prof.) Liens Contacter l’organisation Opens in new window Site web Opens in new window Coût total Aucune donnée ASSISTANCE PUBLIQUE HOPITAUX DE PARIS France Contribution de l’UE € 356 800,80 Adresse 55 BOULEVARD DIDEROT 75012 Paris Voir sur la carte Région Ile-de-France Ile-de-France Val-de-Marne Type d’activité Research Organisations Contact administratif Guillaume Bassez (Dr.) Liens Contacter l’organisation Opens in new window Site web Opens in new window Coût total Aucune donnée UNIVERSITY OF GLASGOW Royaume-Uni Contribution de l’UE € 85 000,00 Adresse UNIVERSITY AVENUE G12 8QQ Glasgow Voir sur la carte Région Scotland West Central Scotland Glasgow City Type d’activité Higher or Secondary Education Establishments Contact administratif Joe Galloway (Mr.) Liens Contacter l’organisation Opens in new window Site web Opens in new window Coût total Aucune donnée UNIVERSITY OF DUNDEE Royaume-Uni Contribution de l’UE € 225 678,00 Adresse Nethergate DD1 4HN Dundee Voir sur la carte Région Scotland Eastern Scotland Angus and Dundee City Type d’activité Higher or Secondary Education Establishments Contact administratif Zoe Kidd (Ms.) Liens Contacter l’organisation Opens in new window Site web Opens in new window Coût total Aucune donnée CATT-SCI LIMITED Royaume-Uni Contribution de l’UE € 33 126,00 Adresse BRAMPTON CLOSE 14 NN8 5XG WELLINGBOROUGH Voir sur la carte Type d’activité Private for-profit entities (excluding Higher or Secondary Education Establishments) Contact administratif Michael Catt (Mr.) Liens Contacter l’organisation Opens in new window Site web Opens in new window Coût total Aucune donnée CONCENTRIS RESEARCH MANAGEMENT GMBH Allemagne Contribution de l’UE € 190 000,00 Adresse Ludwigstr. 4 82256 FURSTENFELDBRUCK Voir sur la carte Région Bayern Oberbayern Fürstenfeldbruck Type d’activité Private for-profit entities (excluding Higher or Secondary Education Establishments) Contact administratif Ameli Schwalber (Dr.) Liens Contacter l’organisation Opens in new window Site web Opens in new window Coût total Aucune donnée THE UNIVERSITY COURT OF THE UNIVERSITY OF ABERDEEN Royaume-Uni Contribution de l’UE € 37 318,00 Adresse KING'S COLLEGE REGENT WALK AB24 3FX ABERDEEN Voir sur la carte Région Scotland North Eastern Scotland Aberdeen City and Aberdeenshire Type d’activité Higher or Secondary Education Establishments Contact administratif Kerry Kidd (Mrs.) Liens Contacter l’organisation Opens in new window Site web Opens in new window Coût total Aucune donnée