Curators' Meeting - November 2014

The seventh annual patient registry curator meeting and oversight committee meeting took place between 3-4 November in Leiden, the Netherlands. The meeting was attended by 68 participants from 30 countries.

The curator meeting which took place on Monday 3 November updated participants on a range of issues such as: TREAT-NMD Alliance and patient registries activities, Care and Trial Site Registry, RD-Connect and the registry related recent publication on DMD. Various case studies outlining the utility of patient registries for neuromuscular disorders were also presented during the meeting. This included: GNE Myopathy Registry, Myotonic Dystrophy Registry, Global FKRP Registry, FSHD Registry and Myotubular Myopathy. The last session of the day was devoted to patient and ethical issues, with the main focus being clinical trials and expectations.

 

Curator Meeting 2014

 
12 Apr 2017