Why this study?
Dystrophin is a protein that is missing in people living with Duchenne Muscular Dystrophy (DMD). It is only partly functional in people living with Becker Muscular Dystrophy (BMD). The missing protein is responsible for muscle breakdown, but it is also missing in the brain. This is leading to brain comorbidities: learning difficulties or behavioural issues such as ADD, ADHD, OCD and autism.
To better understand how DMD/BMD impacts learning and behavioural challenges, the BIND study is created. The goal is to create tools on how to evaluate and treat these brain comorbidities. By doing so, BIND aims to pave the way to better treatment, care, and outcomes for people living with DMD/BMD.
Recruitment
Both sites in the United Kingdom and Italy are currently recruiting boys and men living with DMD/BMD to learn more about learning and behavioural challenges in DMD/BMD. Other countries this study is conducted in are Spain, Netherlands, Denmark and France. In the table below you can find more information about the inclusion criteria and the contact details per site.
What will happen?
One study will involve completing a set of four online questionnaires about development and behaviour. Completing these will approximately take 70 minutes and can be completed in multiple sittings.
A second study will be part of a clinic visit and will use a variety of assessments of cognitive function. This will take approximately 240 minutes, but can be done over more than one visit. Some participants who have expressed an interest, may also be invited to undergo MRI scans.
How do I join?
Those interested to participate in the study can contact their closest study site. Please see the table below for the criteria and contact details per study site.
Please note that criteria might differ per site.
| Study site | Criteria | Contact |
United Kingdom |
||
University College London |
– Boys or young men with a genetically proven diagnosis of DMD aged between 5 and 17 years | Andria Papageorgiou andriani.papageorgiou.14@ucl.ac.uk 020 3987 2199 Isabella Vainieri |
Newcastle University |
– Boys or young men with a genetically proven diagnosis of DMD or BMD aged between 5 and 17 years
– Adult male with genetically proven diagnosis of BMD aged between 18 and 50 years |
Monika Malinova monika.malinova@newcastle.ac.uk 0191 241 8649 |
Spain |
||
Universidad Complutense de Madrid |
– Boys or young men with a genetically proven diagnosis of DMD or BMD aged between 5 and 17 years
– Adult males with genetically proven diagnosis of BMD aged between 18 and 50 years |
Ruben Miranda rubenmir@ucm.es 91 394 6138 Luis Miguel García Moreno |
Netherlands |
||
Leiden University Medical Center |
– Boys or young men with a genetically proven diagnosis of DMD or BMD aged between 5 and 17 years
|
Erik Niks E.H.Niks@lumc.nl |
Kempenhaeghe |
– Adult males with genetically proven diagnosis of BMD aged between 18 and 50 years
|
Jos Hendriksen HendriksenJ@kempenhaeghe.nl |
Italy |
||
Università Cattolica del Sacro Cuore |
– Boys or young men with a genetically proven diagnosis of DMD or BMD aged between 5 and 17 years
|
Daniela Pia Rosaria Chieffo danielapiarosaria.chieffo@policlinicogemelli.it |
Denmark |
||
Region Hovedstaden |
– Adult males with genetically proven diagnosis of BMD aged between 18 and 50 years
|
Rebecca Hendel rebecca.thea.kjaergaard.hendel@regionh.dk |
France |
||
Imagine Institute of Genetic Diseases |
– Boys or young men with a genetically proven diagnosis of DMD or BMD aged between 5 and 17 years
|
Leslie Hemar leslie.hemar@institutimagine.org |
About BIND
Brain Involvement iN Dystrophinopathies (BIND) is a large international project that is studying dystrophin in the brain in Duchenne and Becker Muscular Dystrophy (DMD/BMD). The goal is to understand the role of dystrophin in the brain and treat the subsequent learning difficulties and behavioural issues.
