DMD Care UKAccess to best care for everyone with Duchenne
Our three charities will invest £130,000 into the project, which was launched in October 2020 by Duchenne UK and Joining Jack together with Dr Michela Guglieri and Cathy Turner from Newcastle University. Leading Duchenne muscular dystrophy experts in the UK are working in collaboration with the Duchenne community to review current Standards of Care (published in the Lancet in 2018), and agree and publish recommendations for every area of care that can and should be delivered within the NHS.
Watch below to learn more.
Please note, the roundtable featured in this video took place before the pandemic.
Because Duchenne is a complex disease and covers many areas of medicine, DMD Care UK will break down the project into various working groups such as bone care, cardiac care, psychosocial care, and endocrine care, which covers puberty, adrenal suppression and steroids. As well as being a funding partner, we at Duchenne Research Fund will also participate in the working groups.
Once the recommendations have been agreed upon, leaflets and webinars will be created to make sure the community fully understands the recommendations. This initiative will work with the NorthStar Network, to make sure the recommendations are accessible to all patients, no matter where they live in the UK or what hospital they are seen at.
The working groups are:
Diagnosis; Cardiac, including female carrier screening; Respiratory; Bone; Endocrine/puberty; Steroid dosing and adrenal crisis management; Physiotherapy and rehabilitation; Orthopaedics and surgery; Emergency care; Nutrition and gastrointestinal management; Psychosocial care; Transition to adult care.
For more information, please visit dmdcareuk.org
Standards of Care
Funded in 2021-23
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