The MRC Centre for Neuromuscular Diseases (MRC CNMD) Biobank London is based at the UCL Institute of Neurology and the UCL Great Ormond Street Institute of Child Health.
The Biobank has been approved by the West London & GTAC Research Ethics Committee (06/Q0406/33) and is licensed by the Human Tissue Authority (license numbers: 12198 and 12220).
It takes full advantage of the largest UK patient populations with neuromuscular diseases cared for at the co-located hospitals: Great Ormond Street NHS Trust and the National Hospital for Neurology and Neurosurgery, UCLH Foundation Trust.
The Biobank comprises of samples from patients with confirmed or suspected neuromuscular disorders and a limited number of controls. The samples are vital to allow researchers to better understand diseases and develop new diagnostic tests and drugs.
The Biobank stores myoblasts, fibroblasts, plasma, serum, urine, DNA, muscle tissue and other miscellaneous samples. These samples have been collected from patients or healthy volunteers who have given appropriate consent for research and from existing pathology archives.
Samples are accessible for researchers based in the UK and internationally. Applicants should be employees of a recognised academic institution, hospital or commercial research organization and must hold their own ethical approval to access samples from the Biobank.
Currently, the GOSH Biomedical Research Centre co-funds the salary for the Biobank Coordinator and although no funds are provided for consumables, samples are available free of charge for academic institutions. However, access to samples for commercial organizations is only available on a cost-recovery basis. The biobank will not benefit financially from supplying samples to researchers, but a charge per sample is being introduced to recoup only the costs of collecting, processing and storing the samples (this will also include a contribution towards the salary of the biobank coordinator) and keep the Biobank sustainable.
Additionally, researchers who wish to prospectively collect and bank a large volume of samples as part of their project should discuss this in advance with the biobank coordinator since additional resources are required to process and bank large volume requests, which must be costed for upfront in the grant application.
Please read the Biobank SOP for more details and send an email to firstname.lastname@example.org for any queries.
(last update 07 October 2022)
Professor Sebastian Brandner
Professor Francesco Muntoni