Welcome

Queen Square Annual Update in Neuromuscular Disorders

 This course will be held from Tuesday 7th to Thursday 9th May in the Clinical Neuroscience Lecture Theatre, Lower ground, 33 Queen Square, London WC1N 3B

 REGISTRATION  (right click and select - open in new window or open in new tab)     

 PROGRAMME

Brain Fellowships

Hereditary Neuropathy Serine Trial

The Hereditary Sensory Neuropathy Serine trial (SENSE trial)  ClinicalTrials.gov Identifier:        NCT06113055

The Hereditary Sensory Neuropathy Serine trial (SENSE trial) is open to recruitment.  This is a randomised double-blind placebo-controlled trial of L-serine in Hereditary Sensory Neuropathy type 1 (HSN1) due to variants in SPTLC1/2 gene.

 This is a single-centre study being conducted at the National Hospital for Neurology and Neurosurgery, London UK. The Chief Investigator for this trial is Professor Mary M Reilly.  If you have any affected patients who you think may interested in taking part then please invite them to contact the trial team for further information.

Recruitment will close August 2024.

New NHSE commissioning policies for rituximab and IVIg

• We are pleased to announce that, largely due to the efforts of our president Prof Lunn, rituximab is now approved for treatment of IgM paraproteinaemic demyelinating peripheral neuropathy (anti-MAG phenotype, with or without anti-MAG antibodies): 1910-rituximab-for-treatment-of-PDPN-policy-v2.pdf (england.nhs.uk).  Whilst we have hitherto been able to treat some patients with rituximab by sending them to a haematologist, this was not possible if the bone marrow showed insufficient evidence of underlying lymphoplasmacytic lymphoma.  These patients can now be treated, regardless of bone marrow result, either by you or by your friendly haematologist, under the new commissioning guidance. 
• Also thanks to Prof Lunn (alongside non-neurology colleagues), the updated IVIg commissioning policy is now available: Commissioning-Criteria-Policy-for-the-use-of-Ig-Version-Finala.pdf (mdsas.com).  Newly commissioned diagnoses of relevance to peripheral nerve now include acute autoimmune autonomic ganglionopathy, and neuromyotonia.
• Finally, with thanks largely to the efforts of Dr Rinaldi in Oxford, rituximab can now be used for the treatment of autoimmune nodopathies (with nodal/paranodal antibodies):  NHS England » Rituximab therapy for the treatment of nodal/paranodal antibody positive inflammatory/autoimmune neuropathy in adults and postpubescent children.