The Newcastle Mitochondrial Research Biobank

Based within the Wellcome Centre for Mitochondrial Research (WCMR) at Newcastle University, the Newcastle Mitochondrial Research Biobank (NMRB) was launched in 2016. The NMRB is a collection of biological samples from people with suspected/confirmed mitochondrial disease, family members of people with suspected/confirmed mitochondrial disease and samples from individuals who are known to be unaffected by mitochondrial disease (control samples). The overall aim of the NMRB is to support, underpin and drive research to improve the lives of people with mitochondrial disease and their families.

Types of samples stored in the Biobank include (but are not limited to):

  • Blood
  • Skeletal Muscle
  • Stool
  • DNA/RNA
  • Cell lines

Associated clinical data (including age at sample collection, clinical and genetic diagnoses and clinical signs and symptoms (clinical phenotype)) are also available.                         

Donor Involvement in the Biobank

NMRB work closely with Biobank donors and their families and carers to ensure their views and wishes are integrated into the heart of the Biobank and its policies. The views of donors and their families were first sought during the initial set-up of NMRB in 2016 and, in February 2020, a subsequent participant Focus Group prompted several updates to the operation of the NMRB. 

These included improvements to NMRB Participant Information Sheets and Consent Forms, and an NMRB promotional video to aid understanding of the fate of donated samples. We are continually working to improve the operation of the NMRB and welcome any feedback from Biobank participants, families, carers and end-users of the Biobank.

Application Process

We accept applications from academic and commercial researchers and research organisations based in the UK and overseas. This includes, but is not limited to, NHS and healthcare organisations, universities and pharmaceutical/biotechnology companies.

Step 1: Complete a Newcastle MRB Initial Enquiry Form and submit to NMRBiobank@ncl.ac.uk. This form is used to determine whether the required sample type(s) is/are available in the amounts requested and whether the proposed project is consistent with the strategic aim of NMRB. A response from the NMRB Administrative team will be provided within 3 working days.

Step 2: Submit a full application, using the NMRB Sample Request Form, to NMRBiobank@ncl.ac.uk. The NMRB Sample Request Form will capture relevant details of the background, design, timescale and funding of the proposed project. Details of existing study-specific ethical approval must be provided; alternatively, applicants have the option to apply for ethical approval via NMRB provided the planned project meets the required criteria as outlined in Research Tissue Banks Conditions of REC Favourable Opinion. Applicants external to the WCMR must attach a copy of their CV. All applicants must agree to abide to the terms and conditions of the Biobank as set out in the NMRB Access Agreement.

Step 3: Applications will be assessed by the NMRB Oversight Committee (MRBOC). The MRBOC aim to provide a decision via email within 5 working days of receipt of a valid application. Applicants may be asked to be available at the time of the committee meeting to respond to any application queries raised.

Step 4: Upon approval of an application, a Material Transfer Agreement (MTA), or equivalent will be organised if applicable and an access fee raised (external applicants only).

Step 5: Samples and associated data will be released. A NMRB Sample Receipt Form must be returned by the applicant within 7 working days to NMRBiobank@ncl.ac.uk.

Step 6: Any amendments to applications must be requested via the NMRB Application Amendment Form. Any requests to re-issue samples within 4 weeks of sample receipt must be made via the Sample Re-issue Form (WCMR applicants only).

Step 7: At the end of the stated project timeline, applicants must complete and return an End of Project Form.

NMRB Metrics

As of July 2022:

  • Number of donors directly consented to the NMRB: >470
  • Number of applications received: 46
  • Number of catalogued samples: >3500
  • Number of publications resulting from Biobank applications: 4

 

Publications

Published articles using NMRB samples:

Ahmed ST, Taylor RW, Turnbull DM, Lawless C, Pickett SJ. Quantifying phenotype and genotype distributions in single muscle fibres from patients carrying the pathogenic mtDNA variant m.3243A>G. medRxiv 2022.04.04.22272484; doi: https://doi.org/10.1101/2022.04.04.22272484

Mito T, Vincent AE, Faitg J, Taylor RW, Khan NA, McWilliams TG, Suomalainen A. Mosaic dysfunction of mitophagy in mitochondrial muscle disease. Cell Metab. 2022; 34 (2):197-208.e5. doi: 10.1016/j.cmet.2021.12.017. Epub 2022 Jan 13. PMID: 35030325; PMCID: PMC8815775.

Alix JJP, Plesia M, Lloyd GR, Dudgeon AP, Kendall CA, McDermott CJ, Gorman GS, Taylor RW, Shaw PJ, Day JC. The application of Raman spectroscopy to the diagnosis of mitochondrial muscle disease: A preliminary comparison between fibre optic probe and microscope formats. J Raman Spec 2021; 53 (2): 172-181. https://doi.org/10.1002/jrs.6273

Warren, C., McDonald, D., Capaldi, R. et al. Decoding mitochondrial heterogeneity in single muscle fibres by imaging mass cytometry. Sci Rep 2020; 10: 15336. https://doi.org/10.1038/s41598-020-70885-3

 

About Us

REC reference number: 21/NE/0204 (previously 16/NE/0267).

Funding: Wellcome and NIHR Newcastle Biomedical Resource Centre.

Samples are held under both the Newcastle University HTA licence (ref. 12534) and the Newcastle Hospitals HTA licence (ref. 12193).

 

Contact

For more information, please contact the NMRB Administrative Team at NMRBiobank@ncl.ac.uk or the Biobank Manager directly.

Biobank Manager: Dr Helen Tuppen at helen.tuppen@ncl.ac.uk

Newcastle Mitochondrial Research Bank
Wellcome Centre for Mitochondrial Research
Newcastle University
4th Floor Cookson Building
Medical School
Framlington Place
Newcastle upon Tyne
NE2 4HH
UK