Use of samples from the UK MND DNA Bank (MND Collections)

• Research type

  Research Tissue Bank

• IRAS ID

  270951

• Research summary

  Use of samples form the UK MND Collections

• REC name

  East Midlands - Derby Research Ethics Committee

• REC reference

  19/EM/0278

• Date of REC Opinion

  14 Oct 2019

• REC opinion

  Favourable Opinion

• Data collection arrangements

  The UK MND Collections consists of ~3000 samples that were collected between 2003-2012 from people with MND, as well as samples from their family members and partners/spouses to provide a baseline comparison. Informed consent was given. DNA was extracted from the original blood samples and are stored at the University of Manchester. Additionally, cells were isolated from blood and treated with Epstein Barr Virus to create 'immortalised' cell lines. Treatment with the virus creates an everlasting supply of DNA as the cells continue to divide. There is also a collection of untreated cells remaining, commonly called peripheral blood lymphocytes. Cells and cell lines are stored at the European Collection of Cell cultures (ECACC), Public Health England.

• Research programme

  The UK MND Collections (formerly known as the MND DNA Bank) was created as an international resource to identify the remaining genes that cause inherited MND and to learn more about the genetic contribution to all forms of the disease. This is the largest research initiative the MND Association has ever funded. In addition to DNA, cells donated from people with MND as well as healthy donors. Cells are valuable tools for investigating mechanisms of MND, as well as testing new possible treatments before clinical trials. The MND Association acts as the custodian of MND Collections and oversees the administration of obtaining access to the samples. Its stated principles in doing so include: protecting participants, honour commitments made to them and act within the scope of their consent; ensuring compliance with legal and regulatory requirements; and ensuring that the resource adheres to highest research standards and is used to further understanding of motor neurone disease. The cells and DNA are available to MND Researchers in the UK and internationally, following a formal application process assessed by the MND Association Biomedical Research Advisory Panel.

• Storage license

  12114

• RTBTitle

  Use of samples form the UK MND Collections

• Establishment organisation

  Motor Neurone Disease (MND) Association

• Establishment organisation address

  David Niven House

  10-15 Notre Dame Mews

  Northampton

  NN1 2BG