179th ENMC international workshop: Pregnancy in women with neuromuscular disorders: 5–7 November 2010, Naarden, The Netherlands

Abstract

Sixteen doctors and scientists met in Naarden, The Netherlands, from 5 to 7 November 2010 to review current knowledge in the field of pregnancy in women with neuromuscular disease. The group was joined by three patients and their families. Participants were from eight countries, namely Belgium, Finland, France, Germany, Italy, Norway, The Netherlands and the United Kingdom. A variety of disciplines were represented, including neurology, clinical genetics, cardiology, respiratory medicine, obstetrics and gynaecology, epidemiology, ethics, a nurse specialist, and a representative from the ENMC research committee. Parenthood is a highly desirable aim in life for many couples, and increasingly this also applies to women affected by neuromuscular disorders (NMDs). Little is known about the effect of individual NMD on the course of pregnancy and delivery and conversely the effect of pregnancy on muscles themselves [1]. In the past, many patients have been discouraged from undertaking pregnancy for a variety of reasons. The overarching aim of the workshop was to harness knowledge about pregnancy in NMD with the intention of improving maternal and fetal outcomes. The workshop was structured to first review existing knowledge in the field, and second to propose practical recommendations for each stage of pregnancy, both in general terms and also specific to individual or groups of conditions, for use by all