UK TRIALS & RESEARCH
SAkuraSky study (NMO and NMOSD)
New research into the treatment of Neuromyelitis Optica (NMO) and Neuromyelitis Optica Spectrum Disorder (NMOSD) is currently being conducted via the SAkuraSky study. This study is looking at the safety and efficacy of an investigational medication for NMO/NMOSD that is given along with a person’s current therapy. Click here for more information and eligibility requirements.
NMO UK Clinics & Research
NMO UK is the NMO Specialised Services offered by the NHS. There are two such specialist clinics in the UK located at The Walton Centre in Liverpool and the John Radcliffe Hospital in Oxford. They conduct research into NMO, and given NMO affects the spinal cord, some of the research is also relevant for people who have TM. For a summary of research they are currently conducting, click here, and for current clinical trials, click here.
There is an organisation, NMO-UK, Rare Illness Research Foundation, that raises funds to use for research into NMO.
Research at Queens University Belfast
The Fitzgerald Group researches how the immune system can both cause damage to, and help repair, the Central Nervous System (CNS). The team are particularly interested in finding ways to repair myelin so that drugs to boost this repair process can be developed for patients with demyelinating illnesses. They have recently discovered that cells of the immune system can help repair myelin by coaxing stem-like cells in the CNS to mature and wrap myelin around nerves that have been demyelinated. The team are currently working out how these immune cells trigger this repair process so that mimicking treatments can be developed and trialled in patients with demyelinating conditions like TM, MS and ADEM. This team is led by Dr. Denise Fitzgerald, who herself had TM in 2001.
'TOP 10' Research Priorities for Spinal Cord Injury
Across 2013 and 2014, the TM Society took part in an initiative, which identified the ‘Top 10’ research priorities to investigate in order to improve the quality of life, care and treatment for people living with a Spinal Cord Injury (SCI), including those with Transverse Myelitis. This project was called the Spinal Cord Injury Priority Setting Partnership (SCI-PSP). It was initiated by the Stoke Mandeville Spinal Foundation, independently led by the James Lind Alliance and funded by the Oxford Biomedical Research Centre. It was made up of patient and carer representatives and healthcare professionals to ensure the research questions identified were important to the wider SCI community. Click here to see the Top 10.
UK RESEARCH INTO 'RELATED' TOPICS
The UK is a major centre for research into stem cells, regenerative medicine and spinal cord injury. This is highly relevant for the treatment of demyelinating conditions like Multiple Sclerosis (MS) and TM. There are a number of centres including:
MS research may also be very relevant for TM since both MS and TM are autoimmune disorders that cause inflammation and demyelination. Project RESTORE which is based at Johns Hopkins in the USA, offers a description of the relationship between TM and MS. If a drug were developed to block demyelination or to promote remyelination, it might work for both MS and TM patients. There is lots of information about MS research on the MS Society website. Research into MS also occurs at the Neuroimmunology Unit at University College London.
RESEARCH IN THE USA
Project RESTORE is a collaborative effort, between the MS Center and the TM Center at Johns Hopkins, to fund research and clinical trials. Both the TMA in the USA and the UK TM Society have provided financial backing to Project RESTORE. The TMA was set up by Sanford Siegel and others in 1994, and the Hopkins TM Center was established in 1999 by Dr Doug Kerr. Research at the Hopkins Center was funded by the TM Association and other sources, including the TM Society here in the UK, private foundation grants, National Institute of Health and Project RESTORE.
The Mayo Clinic, another major centre for neurology research in the USA, has also made important discoveries about NMO and Recurrent TM.
At the University of Texas Southwestern (UTSW), there is the Transverse Myelitis and Neuromyelitis Optica Program, the Pediatric Demyelinating Disease Program at Children’s Medical Center, and the Neurosciences Clinical Research Center. Dr. Greenberg, an internationally recognised expert in treating rare autoimmune disorders of the central nervous system, serves as Director of all three programmes.
If you are a neurologist or other medical/healthcare professional or researcher that is currently conducting research into demyelinating conditions, please contact us at firstname.lastname@example.org. We would like to know about you and the work you are doing.