Table 2 Key messages of the 235th ENMC workshop
| Main levels for proactivity | |
|---|---|
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• All stakeholders involved in shared decision making require education: - People affected by a neuromuscular disorder- at any age - Families, healthcare professionals and physicians, parents, caregivers, regulators, industry | |
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• A cultural change is needed and everyone has to act as ambassador for: - Respectful communication among all partners - Independent contribution of all partners - Societal acceptance and support - Pro-active role of all stakeholders, including patients, caregivers and parents | |
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• Structural, process and legislation changes should be promoted by: - Learning from models developed by other disease societies and patient organizations - Including disease-specific patient representatives in advisory boards and ethics committees - Including patient organizations and patient representatives in every stage of clinical trials - Setting dedicated funding by national and or international institutions to support patient involvement in medical research activities |