Dr Stephen Keddie1, Dr Simon Rinaldi2, Dr Michael Lunn1*
1. MRC Centre for Neuromuscular Disease, National Hospital of Neurology and Neurosurgery and Department of Molecular Neuroscience, UCL Institute of Neurology, Queen Square, London, UK.
2. Nuffield Department of Clinical Neurosciences, West Wing, John Radcliffe Hospital, Oxford, UK
Correspondence email firstname.lastname@example.org
Phone 020 3448 3812
Any patient with suspected POEMS syndrome (Polyneuropathy, Organomegaly, Endocrinopathy, Monoclonal Plasma cell disorder, Skin lesions) at any stage of illness (pre/ post treatment/ relapsed).
To investigate the pathological mechanism of neuropathy in POEMS syndrome
1) To define the epidemiology and characterise the phenotype of POEMS syndrome patients in the UK
2) Create the UK register of POEMS syndrome patients, providing prerequisites for research studies.
3) To define the fingerprint of cytokines and other inflammatory molecules responsible for the pathogenesis of POEMS syndrome.
4) To establish the pathologic mechanisms of these molecules in causing the neuropathy associated with POEMS disease using a human induced pluripotent stem cell derived sensory neurones in myelinating co-culture system.
The notifying consultant will send a consent slip to the potential participant. The participant will fill this out and send back to the research team. Alternatively, if the patient agrees, the notifying consultant can contact Dr Keddie via phone or email (above) with the patient’s details. Dr Keddie will contact patients via their preferred method, and if agreeable to participation, an information sheet and consent form will be provided .
Patients will be invited to the Institute of Neurology for assessment (we can reimburse travel), which will involve collection of baseline demographic and clinical data, questionnaires (R-ODS CIDP, ONLS) and examination. Serum and whole blood will be taken for peripheral blood mononuclear cell collection and cytokine analysis. If patients can not attend the Institute of Neurology, a pack containing all necessary instructions and equipment will be sent to the participant allowing them to make an appointment with their GP practice at a time most convenient for them. The blood taking pack will include pre-paid boxes for return of the blood samples to our research group.
Please contact Dr Keddie at email@example.com or call 020 3448 3812