OPTIMISTIC

"Observational Prolonged Trial In Myotonic dystrophy type 1 to Improve QoL-Standards, a Target Identification Collaboration"

Coordinatore	STICHTING KATHOLIEKE UNIVERSITEIT    more  Organization address address: GEERT GROOTEPLEIN NOORD 9 city: NIJMEGEN postcode: 6525 EZ contact info Titolo: Mr. Nome: Maarten Cognome: Van Langen Email: send email Telefono: 31243619791
Nazionalità Coordinatore	Netherlands [NL]
Totale costo	3˙851˙254 €
EC contributo	3˙000˙000 €
Programma	FP7-HEALTH Specific Programme "Cooperation": Health
Code Call	FP7-HEALTH-2012-INNOVATION-1
Funding Scheme	CP-FP
Anno di inizio	2012
Periodo (anno-mese-giorno)	2012-11-01   -   2016-10-31

 Partecipanti

#	participant	country	role	EC contrib. [€]
1	STICHTING KATHOLIEKE UNIVERSITEIT  Organization address address: GEERT GROOTEPLEIN NOORD 9 city: NIJMEGEN postcode: 6525 EZ contact info Titolo: Mr. Nome: Maarten Cognome: Van Langen Email: send email Telefono: 31243619791	NL (NIJMEGEN)	coordinator	1˙344˙550.40
2	UNIVERSITY OF NEWCASTLE UPON TYNE  Organization address address: Kensington Terrace 6 city: NEWCASTLE UPON TYNE postcode: NE1 7RU contact info Titolo: Mrs. Nome: Airey Cognome: Fiona Email: send email Telefono: +44 0 1912824515 Fax: +44 0 1912824524	UK (NEWCASTLE UPON TYNE)	participant	464˙326.00
3	ASSISTANCE PUBLIQUE - HOPITAUX DE PARIS  Organization address address: 3 Avenue Victoria city: PARIS postcode: 75004 contact info Titolo: Dr. Nome: Guillaume Cognome: Bassez Email: send email Telefono: +33 1 49 81 21 11	FR (PARIS)	participant	356˙800.80
4	LUDWIG-MAXIMILIANS-UNIVERSITAET MUENCHEN  Organization address address: GESCHWISTER SCHOLL PLATZ 1 city: MUENCHEN postcode: 80539 contact info Titolo: Prof. Nome: Benedikt Cognome: Schoser Email: send email Telefono: 498952000000 Fax: 408952000000	DE (MUENCHEN)	participant	263˙200.80
5	UNIVERSITY OF DUNDEE  Organization address address: Nethergate city: DUNDEE postcode: DD1 4HN contact info Titolo: Ms. Nome: Zoe Cognome: Kidd Email: send email Telefono: 441382000000 Fax: 441382000000	UK (DUNDEE)	participant	225˙678.00
6	Concentris Research Management GmbH	DE	participant	190˙000.00
7	UNIVERSITY OF GLASGOW  Organization address address: University Avenue city: GLASGOW postcode: G12 8QQ contact info Titolo: Mr. Nome: Joe Cognome: Galloway Email: send email Telefono: +44 141 330 3884 Fax: +44 141 330 5611	UK (GLASGOW)	participant	85˙000.00
8	THE UNIVERSITY COURT OF THE UNIVERSITY OF ABERDEEN  Organization address address: KING'S COLLEGE REGENT WALK city: ABERDEEN postcode: AB24 3FX contact info Titolo: Mrs. Nome: Kerry Cognome: Kidd Email: send email Telefono: +44 1224 272663	UK (ABERDEEN)	participant	37˙318.00
9	CATT-SCI LIMITED  Organization address address: BRAMPTON CLOSE 14 city: WELLINGBOROUGH postcode: NN8 5XG contact info Titolo: Mr. Nome: Michael Cognome: Catt Email: send email Telefono: +44 7712671420	UK (WELLINGBOROUGH)	participant	33˙126.00

Mappa

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 Obiettivo del progetto (Objective)

'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.'