Why We Are Launching a Monthly Barometer – to Demonstrate the Human Cost of Delaying Newborn Screening
The UK SMA Newborn Screening Alliance is focused on ensuring that a positive decision is made about newborn screening for […]
Read moreArchive: Jun 2023
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You are currently browsing the UK SMA Newborn Baby Screening Alliance blog archives for June 2023.
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- Debate on Patients with Rare Diseases Covers Newborn Screening for SMA
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- APPG for Muscular Dystrophy Publishes Report on Newborn Screening for Rare Diseases
- Detailed Academic Paper on Cost-Effectiveness of Newborn Screening for SMA in England is Now Available
- New Academic Article Reviews Treatment Results in Patients who were Diagnosed with SMA Through Newborn Screening
- New model on the cost effectiveness of newborn screening for SMA in England
- New Paper Summarises Clear, Well-Defined Treatment Pathway for Babies Diagnosed with SMA via Newborn Screening
- New Study Confirms Clinical Effectiveness of Newborn Screening for SMA, and an Update on the SMA / ISE Partnership Board
- New Study Shows how Newborn Screening for SMA Leads to More Children Walking Two Years Post Diagnosis
- NHS genomics developments give hope to critically ill newborn babies and children but do not address urgent need for newborn screening for SMA
- NHS press release highlights impact of treatment options on SMA prognosis, but newborn screening is essential to deliver true transformation for babies with SMA
- NICE Approves Zolgensma Gene Therapy for Pre-Symptomatic Treatment of SMA
- Planning for the SMA “in service evaluation” is making good progress but we must maintain momentum to remove health inequalities for babies born in the UK as soon as possible
- SMA included in the first list of conditions in Genomics England’s Generation Study
- SMA Newborn Screening – Community Update
- SMA Newborn Screening In-Service Evaluation Must be for All Newborns in the UK
- Steering Group Meeting Update
- Sweden Introduces Newborn Screening for SMA
- Temporary change to Zolgensma® treatment eligibility emphasises need for newborn screening for SMA
- Thames Valley Pilot Study extends beyond the Thames Valley and finds a new name, due to enthusiasm for newborn screening for SMA in other places
- UK NSC Review of SMA Has Commenced!
- UK SMA NBS Alliance Supports Research Review that will Inform the UK NSC Assessment of SMA for the UK Newborn Screening Programme
- UK SMA Newborn Screening Alliance – Official Launch
- Update on UK SMA Newborn Screening Alliance Engagement with UK NSC
- Why We Are Launching a Monthly Barometer – to Demonstrate the Human Cost of Delaying Newborn Screening
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- Study of the Acceptability of Newborn Screening for SMA to Inform Screening Policy Makers in UK
- Update on progress in the UK NSC assessment of newborn screening for spinal muscular atrophy
- Update on UK SMA Newborn Screening Alliance engagement with UK NSC
- What’s happening?
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