Minutes of the European POmpe Consortium (EPOC) Meeting: March 27 to 28, 2015, Munich, Germany

The meeting was opened by Benedikt Schoser who welcomed all attendees to Munich and summarized the agenda.
Ans van der Ploeg gave an overview of the first meeting of the consortium in September 2014 in Naarden. At this first meeting the EPOC consortium was founded, a minimal dataset was agreed for adult patients, as well as criteria for starting and stopping enzyme replacement therapy (ERT) in adult patients. She elaborated shortly on the scope of the consortium: i.e. via concerted actions of the partners we aim to i) improve prospects for patients by combining efforts on understanding the disease process, existing therapies and development of innovative treatment strategies; ii) to provide guidance on treatment, care and outcome measures, iii) to harmonize the views on access and reimbursement of therapies in Europe in order to create equal chances for patients with Pompe disease across Europe.
After the first meeting in Naarden, the steering group for the Naarden and Munich meetings proposed the name European POmpe Consortium (EPOC). All attendees agreed to adopt this name.
Michelle Kruijshaar presented the progress on publications resulting from the Naarden meeting. A lay summary was posted on the ENMC website in September 2014. The full workshop report is now available via the Journal “Neuromuscular disorders”. Finally, a separate manuscript is being prepared to describe criteria for starting and stopping ERT in adult Pompe patients. The proposed start and stop criteria for adult patients were reviewed. A few remarks from the group were made regarding the phrasing of certain stop criteria, which will be incorporated in the manuscript that is being prepared.