- Thirty-six representatives of academia, clinics, industry and patient organisations from 10 countries (Belgium, the Netherlands, Spain, Italy, Greece, France, United Kingdom, Switzerland, United States, Canada) attended the ‘Meeting on data sharing for Duchenne’ organised by the Duchenne Parent Project. During the meeting the current status, opportunities and challenges of data sharing in the Duchenne field were discussed.
- In 2015, the 1st workshop on Assistive Technology for People with Duchenne was held. The primary goal of that meeting was to bring individuals from different disciplines together and discuss opportunities to accelerate the development of upper-extremity assistive technology for enhancing the functional abilities of non-ambulant men with Duchenne Muscular Dystrophy (DMD). One of the conclusions of the meeting was that protocols to evaluate the efficacy and usability of arm supports in a laboratory and in a home-based setting were needed.
- Twenty-six representatives of academia, clinics, patient organisations and industry from eight countries (Argentina; Australia; Belgium; Italy; the Netherlands; Switzerland; United Kingdom; United States) attended the workshop on ‘Nutrition in Duchenne muscular dystrophy’ organised by the Duchenne Parent Project the Netherlands (DPP). During the workshop current knowledge and clinical practice regarding nutrition in DMD was discussed, as well as research, preclinical and clinical, and guidelines for patients and caretakers.
- The 1st workshop on Assistive Technology for People with Duchenne Muscular Dystrophy (DMD) was held in London (United Kingdom), on April 27th 2015. The primary goal was to bring people from different disciplines together and discuss opportunities to accelerate the development of upper-extremity assistive technology for enhancing the functional abilities of non-ambulant men with DMD. The topics of the workshop included the state of the art, emerging avenues and challenges of upper-extremity assistive technology.
- In June 2014 TREAT-NMD organised a workshop at The Wellcome Trust head office in London to discuss issues such as natural history, outcome measures, efficacy measurements, animal models and clinical study design as part of the coordinated response to the public consultation by the European Medicines Agency (EMA) on the draft guidelines for clinical investigation of medicinal products in Duchenne and Becker muscular dystrophy (DMD/BMD). The workshop attracted over 60 participants from 9 countries representing patients, academics, and industry.
- Twenty clinicians, physiotherapists and representatives from advocacy groups and industries from six countries convened for a Parent Project sponsored workshop on ‘Assessment of Upper Limb Function in Duchenne Muscular Dystrophy (DMD)’. Following previous meetings [1,2] highlighting the lack of outcome measures in non ambulant patients, a number of exploratory studies have been planned to investigate the suitability of the available measures.