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Latest News: Research

Revisiting The Consensus Statement For Standards Of Care In SMA

11 May 2016 / Posted in: Research

In February this year, clinical researchers and patient representatives from Europe and the US met to start work on the major review of the International Standards of Care for SMA.

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Ionis Pharmaceuticals update on Phase II study of Nusinersen

11 May 2016 / Posted in: Research

Ionis Pharmaceuticals (previously known as Isis Pharmaceuticals) have released updated information on their ongoing Phase II clinical trial of Nusinersen in infants with SMA. The updated information is current as of January 26th, 2016.

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New Scientist Q & A for 2016

25 April 2016 / Posted in: Research

Our first 2016 Q and A is with Rafael J. Yáñez-Muñoz who runs the AGCTlab at Royal Holloway, University of London and organises the annual Rare Disease Day event that we attend.

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New Clinical Care Research Article

07 April 2016 / Posted in: Research

​In this new article, Dr Alex Murphy (our Clinical Care Research Correspondent) will try to answer the question "How do doctors select treatments?". He will also outline one way that decision makers within the NHS compare the different types of study and decide on how strong the evidence is, for or against a treatment.

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Cello Health Insight International Market Research Project

10 March 2016 / Posted in: Research

The interviews, being carried out on behalf of a pharmaceutical company, wish to explore the experiences of people living with / caring for someone with SMA Type 2 or Type 3, including their journey from initial symptoms, through diagnosis and ongoing management.

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SMA Support UK at Rare Disease Day 2016

02 March 2016 / Posted in: Research

Each year Rare Disease Day is organised to raise awareness about rare diseases and the effect that they have on the lives of patients, their families, and society. SMA Support UK attended Rare Disease Day at Royal Holloway’s annual event, which was our fifth year in a row.

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Reproductive Choices in Families with SMA – A Survey

23 February 2016 / Posted in: Research

Families are invited to participate in a US based research survey looking at reproductive choices in families with SMA, specifically in regards to choices surrounding preimplantation genetic diagnosis. The closing date for completing the survey is 15th May.

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Eurordis (European Organisation for Rare Diseases) Needs Your Expertise

16 February 2016 / Posted in: Research

Eurordis is conducting a survey in an effort to better understand how well people are engaged in decisions about their medical care.

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Biogen and Ionis Pharmaceuticals Provide Update on Nusinersen (Formerly Known as ISIS-SMNRx)

31 January 2016 / Posted in: Research

Biogen and Ionis Pharmaceuticals (previously Isis Pharmaceuticals) have provided an update on the clinical development of their antisense oligonucleotide drug Nusinersen, which used to be known as Isis-SMNRx.

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Two New Clinical Care Research Articles

12 January 2016 / Posted in: Research

Dr. Alex Murphy, our Clinical Care Research Correspondent, has written two review articles; one about diet and SMA and one about exercise and SMA.

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