National CJD Research & Surveillance Unit (NCJDRSU) BioResource

• Research type

  Research Tissue Bank

• IRAS ID

  266038

• Research summary

  UK National CJD Research & Surveillance Unit (NCJDRSU) BioResource

• REC name

  North West - Haydock Research Ethics Committee

• REC reference

  19/NW/0403

• Date of REC Opinion

  5 Sep 2019

• REC opinion

  Further Information Favourable Opinion

• Data collection arrangements

  CSF, blood and urine samples from patients with suspected CJD or related prion diseases will be stored by the NCJDRSU. The NCJDRSU currently holds 1200 CSF samples, 1455 blood samples and 101 urine samples. Approximately 300 fresh unprocessed cerebrospinal fluid (CSF) samples/year and 60 fresh unprocessed blood samples are collected per year from patients with suspected CJD or related prion disease throughout the UK. Inclusion in the NCJDRSU BioResource tissue bank is dependent on obtaining consent from the patients' welfare guardian, legal representative or nearest relative or informed consent from the patients if they are deemed capable of giving informed consent by the patients'clinician.
  All these biological samples are stored in secure -80C freezers located within the NCJDRSU or within the Chancellors Building, University of Edinburgh. All freezers are located within controlled access areas and locked with only designated NCJDRSU BioResource staff having access to keys. Samples kept under these storage conditions are viable for at least 10 years. Demographic data such as age, date of birth, gender and relevant clinical information accompany each sample.

• Research programme

  The aim of this BioResource is to facilitate research into the underlying physiological and pathological mechanisms that underpin CJD and other prion diseases plus related neurodegenerative disorders, studies of infectivity and transmissibility of disease by biological samples and the identification of genetic risk factors that may influence disease course. In addition the creation of this BioResource will enable diagnostic tests to developed and evaluated more readily and may aid the development and evaluation of therapeutic interventions. The BioResource is listed on the UKCRC Tissue Directory. Studies may include the use of animal models, this will be primarily murine models but occasionally primate studies may be used. Studies involving genetic analysis may also be undertaken. Access to the BioResource will be available to national and international research groups who are undertaking research into any of the stated aims given above and with appropriate ethical approval. Applicants will be required to complete a tissue user application form which will include details of the nature of research and any available scientific proof-of-principle for any research planned, what biological samples are requested, why these particular samples are requested and the number and volume of biological samples required. Each application will be assessed on its merits by the BioResource Local Management Group and referred to the BioResource Steering Group if there is any conflict of interest or if the research proposed is contentious. Applications from external or internal (NCJDRSU) researchers will be treated identically.

• RTBTitle

  UK National CJD Research & Surveillance Unit (NCJDRSU) BioResource

• Establishment organisation

  National CJD Research & Surveillance Unit (NCJDRSU)

• Establishment organisation address

  Bryan Matthews Building

  Western General Hospital

  Edinburgh

  EH4 2XU