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

• Research type

  Research Tissue Bank

• IRAS ID

  344390

• Research summary

  Use of samples from the UK MND Collections

• REC name

  East Midlands - Derby Research Ethics Committee

• REC reference

  24/EM/0189

• Date of REC Opinion

  12 Nov 2024

• REC opinion

  Further Information Favourable Opinion

• Data collection arrangements

  Information about every single participant and the sample they have given is stored on a secure database. This is stored following the guidelines of the Data Protection Act. When the details were recorded on the database, they were anonymised using a unique ID number. Participants can only be identified by their date of birth. No other information can be accessed through the database.

  Each blood sample taken was divided into two sets. Together with the information on
  the participants, these have been used to create an important resource of DNA samples
  and cell lines for MND researchers to use. One set of samples are held in UKBioCentre, in Milton Keynes. The DNA was taken from the blood sample using state-of-the-art technology and are being used in research to tell us more about the genetic causes of the disease. The other set of samples were sent to the European Collection of Authenticated Cell Cultures (ECACC) at Porton Down. They were used to create an ‘everlasting’ source of DNA and to create cell models of MND.

• Research programme

  The UK MND Collections database was designed to help identify the genetic factors involved in the disease by studying the DNA (or genetic material) of people with MND. Over 3,000 people with MND gave blood and data samples to UK MND Collections over the ten years of the collection/recording phase of this project. Two hundred people with MND also completed a questionnaire on clinical and lifestyle information such as occupation, where you live and the onset of symptoms. Together with questionnaire data from age and gender matched healthy volunteers, these data form the Epidemiology part of the UK MND Collections. This provides genetic, clinical and lifestyle information in order to identify environmental factors that may contribute to disease in people with MND.

• Storage license

  12114

• RTBTitle

  Use of samples from the UK MND Collections

• Establishment organisation

  Motor Neurone Disease (MND) Association

• Establishment organisation address

  Francis Crick House

  6 Summerhouse Road, Moulton Park

  Northampton

  NN3 6BF