The John Walton Muscular Dystrophy Research Centre Biobank

• Research type

  Research Tissue Bank

• IRAS ID

  341982

• Research summary

  The John Walton Muscular Dystrophy Research Centre Biobank

• REC name

  North East - Newcastle & North Tyneside 1 Research Ethics Committee

• REC reference

  24/NE/0066

• Date of REC Opinion

  19 Apr 2024

• REC opinion

  Favourable Opinion

• Data collection arrangements

  - Samples taken for diagnostic purposes in Newcastle upon Tyne Hospitals NHS Foundation Trust such as
  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) subject to appropriate consent for research.

  - 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, muscle, skin, CSF 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.
  This biobank stores, tissue samples, cultured cells such as myoblasts and fibroblasts from tissue samples, and body fluids such as processed urine, CSF, blood and derivatives such as plasma, serum, DNA, RNA, and other miscellaneous samples from patients.
  

• 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

  The John Walton Muscular Dystrophy Research Centre Biobank

• Establishment organisation

  Newcastle University

• Establishment organisation address

  Sir James Spence Institute, RVI

  Queen Victoria Road

  Newcastle Upon Tyne

  NE1 4LP