Working Group Leaders – Volker Straub Susana Quijano-Roy
Knowledge about the onset of muscle pathology detected by imaging, about the degree of progression, the spectrum of selective involvement across the whole body and about modifiers of these parameters is still very sparse for the majority of NMD. This lack of information might delay the diagnosis of patients with NMD and impede our understanding of disease mechanisms.
Specific objectives:
- Hold two WG meetings per year that coordinate the collection of an agreed number of standardized MR images for defined diseases.
- Establish and validate a secure Information Technology (IT) platform to share medical images between experts.
- Establish an online inventory of muscle MR images with associated standardised clinical and genetic data from NMD prioritized by the consortium (including a spectrum from pre-symptomatic to advanced, whole-body images, where appropriate cardiac images).
- Define regions of interest (ROI) for each disease, indicating the optimal muscle to biopsy or to be used for outcome measurements in a clinical trial setting (showing most reliable change over time).
- Develop a user friendly digital NMD atlas of muscle MR images with public access.
The working group involved with this consists of…
| Carsten Bonnemann | Robert Carlier |
| Jorge Diaz | Michael Hanna |
| Arend Heerschap | Heinz Jungbluth |
| Eugenio Mercuri | Jasper Morrow |
| Francesco Muntoni | Anna Pichiecchio |
| Susana Quijano-Roy | Mary Reilly |
| Enzo Ricci | Volker Straub |
| Giorgio Tasca | Bjarne Udd |
| Jon Andoni Urtizberea | John Vissing |
| Maggie Walter | Tarek Yousry |