The John Walton Muscular Dystrophy Research Centre Biobank

• Research type

  Research Tissue Bank

• IRAS ID

  249755

• Research summary

  Newcastle MRC Centre Biobank for Rare and Neuromuscular Diseases

• REC name

  North East - Newcastle & North Tyneside 1 Research Ethics Committee

• REC reference

  19/NE/0028

• Date of REC Opinion

  27 Mar 2019

• REC opinion

  Further Information Favourable Opinion

• Data collection arrangements

  This Biobank consists of two collections:
  - Samples taken for diagnostic purposes and stored in Newcastle upon Tyne Hospitals NHS Foundation Trust
  Biopsies or surgically removed tissue, blood or other relevant fluids will be collected from patients with a suspected or diagnosed neuromuscular or rare diseases. These samples will be stored in diagnostic labs in Newcastle Hospitals Trust and surplus material released to researchers when requests are approved by the Access Committee(see access policy submitted as part of this application).

  - Samples stored and processed in Newcastle University specifically for use in research
  Biopsies or surgically removed tissue, blood or other relevant fluids, surplus to diagnostic requirements, will be collected from patients with a suspected or diagnosed neuromuscular or rare diseases. Blood, urine skin or saliva samples may be collected outside of diagnostic requirements with patient consent. On occasions control samples are collected at the time of a routine procedure, which is indicated by clinical need.

  From samples collected, cells are cultured, frozen and stored in the biobank. The actual material the cells are grown from is discarded. This biobank stores cultured cells such as myoblasts and fibroblasts, and body fluids such as processed urine, plasma, serum and DNA, and other miscellaneous samples from patients.

  The Newcastle MRC Biobank for Rare and Neuromuscular Diseases (NMDs) predominantly collects samples from patients and family members living across the UK and further afield with a confirmed or suspected diagnosis such as muscular dystrophy, congenital myopathy, mitochondrial myopathy and other rare diseases. The principal objective is to be able to collect DNA, human muscle and non-muscle cells, and other biological samples such as plasma and serum from patients affected by rare diseases and NMDs. All samples are stored in Newcastle upon Tyne Hospital Trust NHS diagnostic lab or in a specialist lab in Newcastle University in compliance with the Human Tissue Act. The cultured cells and other materials provide an extremely valuable resource to researchers from across the world carrying out studies into the diagnosis, treatment, prevention and cure of rare and neuromuscular diseases.

• Research programme

  On an ad hoc basis samples are also collected as part of procedures of an ethically approved clinical trial or study concerned with neuromuscular or rare diseases in the UK and outside of the UK and by the Tissue Collection Centres.

• Storage license

  12534

• RTBTitle

  Newcastle MRC Centre Biobank for Rare and Neuromuscular Diseases

• Establishment organisation

  Newcastle University

• Establishment organisation address

  Urban Sciences Building, Newcastle Helix

  Newcastle upon Tyne

  NE4 5TG