Use of samples from the UK MND DNA Bank
Research type
Research Tissue Bank
IRAS ID
150298
Contact name
Belinda Cupid
Contact email
Research summary
Use of samples from the UK MND DNA Bank
REC name
East Midlands - Derby Research Ethics Committee
REC reference
14/EM/1088
Date of REC Opinion
11 Sep 2014
REC opinion
Further Information Favourable Opinion
Data collection arrangements
Samples from people with MND, partners/spouses (as controls for the patient) and family members of people with MND were collected.
DNA samples are stored at the University of Manchester.
Lymphoblastoid cell lines and peripheral blood lymphocytes are stored at the European Collection of Cell Cultures, Public Health England*.
*Lymphocytes are a type of white blood cell within blood that contain DNA. These were isolated from blood and 'treated' with Epstein Barr Virus (a harmless virus) to create lymphoblastoid cell lines. This 'treatment' allows them to divide continually, creating an 'everlasting' supply of DNA.
To ensure efficient treatment with EBV only half the lymphocytes were treated at a time. For the majority of samples the first transformation was successful, thus the second half of the lymphocytes has been retained untransformed. These retained, untransformed lymphocytes are commonly called peripheral blood lymphocytes or PBLs. (See enclosed Figure 1 for a further explanation of the process).
The PBLs are the only part of the DNA Bank that are classed as relevant material according to the Human Tissue Act.Research programme
The MND Association is a patient organisation and a research funder. We directly support more than 3,000 people with MND, their families and carers. The Association funded the creation of the DNA Bank, where the day to day collection of samples was coordinated by the principal investigators based in Sheffield, Birmingham and King's College London. The MND Association also acts as the custodian of the DNA Bank and oversees the administration of obtaining access to the samples. It's stated principles in doing so include: **Protect participants, honour commitments made to them and act within the scope of their consents **Ensure compliance with legal and regulatory requirements **Ensure that the resource adheres to highest research standards and is used to further understanding of motor neurone disease **Prioritise access to those parts of the DNA Bank that are limited in availability **Clarify intellectual property rights and the results that flow from the DNA Bank. The Association is in a good position to oversee the DNA Bank, it is able to inform and represent the wishes of the participants and also promote the DNA Bank to researchers.
RTBTitle
Use of samples from the UK MND DNA Bank
Establishment organisation
Motor Neurone Disease (MND) Association
Establishment organisation address
David Niven House
10-15 Notre Dame Mews
Northampton
NN1 2BG