OPTIMISTIC

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

 Coordinatore 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

 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


 Word cloud

Esplora la "nuvola delle parole (Word Cloud) per avere un'idea di massima del progetto.

patients    treatment    therapy    cognitive    guidelines    quality    health    outcome    dm    there    life    care    exercise    disease    trial    optimistic    clinical    behavioural   

 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.'

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