News

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 UK Charity for Peripheral Neuropathy

The BPNS wish to facilitate setup of a new charity for peripheral neuropathy in the UK.  There is no charity or association in the UK which supports people with all the many causes of peripheral neuropathy.  Only a few specific causes of neuropathy have a UK charity, such as CMT-UK, GAIN and Diabetes UK.  There is no UK charity to support idiopathic neuropathy, painful small fibre neuropathy (except general pain charities), brachial neuritis, carpal tunnel and entrapment neuropathies, chemotherapy neuropathy (except cancer charities), etc. Several people have come forward to assist with this and work is progressing to get the new charity up and running.

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. 

GWAS study of CIDP

Members are encouraged to participate in a genome-wide association study of CIDP. Brief details can be found HERE

COVID Vaccination and GBS

Following on from the successful BPNS instigated study of GBS linked to COVID-19 infection - whhich found no evidence that COVID is a significant trigger for GBS, te society is now encouraging a similar collaborative study of GBS following COVID vaccination (any vaccine). Details can be found in the members pages - HERE (login to access)

Face to face out-patient policy for COVID

BPNS face-to-face outpatient policy 

Agreed at BPNS AGM, 6 November 2020, amended 16 January 2021. The latest version of this policy can now be found in the new 'Policies' page under 'About' on the society home page.

COVID-19 vaccination and peripheral nerve disease

The BPNS sees no reason for any patient with any peripheral nerve disease to avoid having any of the COVID-19 vaccines. A commentary on the topic my Mike Lunn can be found HERE. An information sheet giving the Societys official view for concerned patients is HERE.

No link found between COVID-19 and GBS

BPNS members have contributed to an important study led by Stephen Keddie and Mike Lunn showing no association between COVID-19 and GBS. <Link>

COVID-19

The COVID-19 epidemic raises some questions for patients being treated for neuromuscular disease. The following documents and links may help:

Guidance regarding immunosuppression - (Mike Lunn / Queen Square)

ABN COVID-19 documents index

BPNS advice for patients

International Master - Peripheral Nervous System Diseases

A top quality  international master class in peripheral nerve biology and disease based in Milan, Italy. The course involves five separate modules each of one week duration spread throughout a year.

Richard Hughes travel bursaries

The BPNS is delighted to announce the Richard Hughes bursaries in honour of Professor Richard Hughes, the first president of the BPNS. These comprise up to three travel bursaries a year, two to help fund a trainee to travel to the international Peripheral Nerve Society (up to £500 each) and one (up to £300) to attend the Spring meeting of the Association of British Neurologists (ABN).