On #RareDiseaseDay, ENMC launches white paper for shared decision making in NMD research
Two years ago, the European Neuromuscular Centre (ENMC) held a special meeting to explore the position of neuromuscular patients in Shared-Decision-Making (SDM) and develop recommendations.
One of the most effective examples of patient involvement in the neuromuscular research field is the ENMC itself. Co-founded by a group of patient organisations and clinicians, the ENMC aims to encourage and facilitate communication and collaboration in neuromuscular research and health care. It hosts scientific workshops bringing together scientists, clinicians and patients to discuss specific topics of interest.
The 2018 meeting on shared decision making resulted in two scientific publications published in 2019*. Now, meeting participants have also produced a White Paper that details more specific goals and actions for all stakeholders involved in neuromuscular disease research.
The White Paper can be downloaded via the link below and is excellent reading material for anyone with an interest in the meaningful involvement of patients in research.
White Paper: The position of neuromuscular patients in Shared Decision Making
Recommendations from ENMC Workshop
Milan, Italy, January 19-20, 2018
*Lochmüller et al., Journal of Neuromuscular Diseases, 2019, 6:161–172
*Ambrosini et al., Orphanet Journal of Rare Diseases 2019, 14:126