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Welsh Neuroscience Research Tissue Bank (WNRTB)

Population Size

3,431

People

Years

2006

Associated BioSamples

Serum

Plasma

...see more

Geographic coverage

Wales

UK

Lead time

Variable

Summary

The purpose of the WNRTB is to serve as a repository of biological samples donated by people across the UK for use in studies advancing the understanding of, and care for, neurological diseases. Samples are obtained from healthy volunteers and from patients undergoing treatment at UK hospitals or locally to clinical or research groups. Research will be undertaken within Cardiff University laboratories, or other registered research institutes performing work on neurological diseases.

Documentation

The Welsh Neuroscience Research Tissue Bank is a collection of human (mainly fluid) biological samples donated from more than 3000 patients undergoing neurological investigations or who have known neurological diagnoses, as well as from healthy volunteers. Donors are recruited locally in South Wales, and from across the UK. Participants must be over the age of 16 and give consent for DNA analysis to take place. The collection comprises samples (for example, but not limited to blood, serum, plasma, CSF, DNA, RNA) from disorders such as Multiple sclerosis, Epilepsy, MND, Idiopathic Intracranial hypertension, brain tumours, as well as healthy volunteers. To date more than 100,000 sample aliquots are available for neurological research. Samples are available for research into neurological disorders via an application process and governance panel review. The WNRTB is authorised by the Wales REC 3 to release samples to researchers following a review of the intended use of samples. Researchers receiving samples from the WNRTB are deemed to have ethics approval and are therefore NOT required to have specific approval from an NHS ethics committee for the use of these samples, as samples will be provided anonymously with only the minimum data set. The WNRTB infrastructure also acts as a guardian to several major clinical trials and specific research projects, each contributing to a large resource available to researchers.

Dataset type
Health and disease
Dataset sub-type
Neurological
Dataset population size
3431

Keywords

Multiple Sclerosis, Neurology, clinically isolated syndrome, serum, plasma, CSF, DNA, Epilepsy, MND, Brain tumour, IIH, healthy controls

Observations

Observed Node
Disambiguating Description
Measured Value
Measured Property
Observation Date

Persons

Persons diagnosed with Multiple sclerosis or other neuroinflammatory demyelinating disorder (e.g. CIS, NMO, ADEM)

2575

persons diagnosed with MS, CIS, NMO

21 Feb 2025

Events

Total number of sample aliquots available to research from pwMS.

92184

sample aliquot

21 Feb 2025

Events

Total number of Serum aliquots (300ul) from pwMS

38004

sample aliquot

21 Feb 2025

Events

Total number of Plasma aliquots (300ul) from pwMS

45946

sample aliquot

21 Feb 2025

Events

Total number of DNA samples from pwMS

3787

sample aliquot

21 Feb 2025

Events

Total number of CSF aliquots (300ul) from pwMS

3988

sample aliquot

21 Feb 2025

Events

Total number of other sample aliquots from pwMS (e.g. whole blood, PBMC, Tears)

463

sample aliquot

21 Feb 2025

Persons

Participants diagnosed with Epilepsy

366

persons diagnosed with Epilepsy

21 Feb 2025

Events

Number of DNA samples from patients with Epilepsy

327

sample aliquot

21 Feb 2025

Events

Number of plasma sample aliquots from patients with Epilepsy

2216

sample aliquot

21 Feb 2025

Events

Number of serum sample aliquots from patients with Epilepsy

1911

sample aliquot

21 Feb 2025

Persons

Participants diagnosed with Motor Neuron Disease (MND)

76

persons diagnosed with MND

21 Feb 2025

Events

number of DNA samples from persons with MND

67

samples

21 Feb 2025

Events

number of plasma sample aliquots from persons with MND

94

sample aliquots

21 Feb 2025

Events

number of serum sample aliquots from persons with MND

71

sample aliquots

21 Feb 2025

Persons

Total participants (all diagnoses)

3431

participant

24 Feb 2025

Events

Number of serum aliquots available in bank (all diagnoses)

43347

sample aliquot

24 Feb 2025

Events

Number of plasma aliquots available in bank (all diagnoses)

52203

sample aliquot

24 Feb 2025

Events

Number of CSF sample aliquots available in bank (all diagnoses)

7855

sample aliquot

24 Feb 2025

Events

Number ofDNA samples available in bank (all diagnoses)

4557

sample

24 Feb 2025

Provenance

Purpose of dataset collection
Other
Source of data extraction
EPR, Paper-based
Collection source setting
Cohort, study, trial, Secondary care - Outpatients, Secondary care - In-patients, Clinic
Image contrast
Not stated
Biological sample availability
Serum,Plasma,DNA,Whole blood,RNA,Other

Structural Metadata

Details

Publishing frequency
Annual
Version
1.0.0
Modified

20/02/2025

Citation Requirements
Samples provided by the Welsh Neuroscience Research Tissue Bank (approved by Wales Rec 3, Ref: 24/WA/0049)

Coverage

Start date

01/09/2006

Time lag
Variable
Geographic coverage
Wales, UK
Minimum age range
16
Maximum age range
150
Follow-up
Other

Accessibility

Language
en
Alignment with standardised data models
LOCAL
Controlled vocabulary
SNOMED CT
Format
text

Data Access Request

Dataset pipeline status
Available
Time to dataset access
Variable
Access request cost
An indicative cost will be provided to applicants upon application. Charges will be based on workload associated with the application. Discussions surrounding costs to access material should be initiated prior to funding applications being made.
Access method category
Varies based on project
Access service description

Application for release of samples for research will be by written request, using a specific request form (contact WNRTB@cardiff.ac.uk). Applications will be assessed by the Tissue Bank Governance Committee. The committee will meet to consider applications as required, with a deadline for a decision of 6 weeks from receipt of original signed copy. Where members of the governance committee are involved in a particular application for use of tissue, those members will not be involved in the consideration of that application and will not be present when it is discussed. Where necessary, the committee will seek external review from appropriate senior investigators in the UK neurology research community before coming to a decision. This is stated on the application form and applicants have the option of excluding particular external assessors if they wish. Applicants wishing to request further samples will be required to complete the Tissue Re-application Form for access to materials from the Welsh Neuroscience Research Tissue Bank.

We also welcome applications for pilot projects. A pilot project is defined as one that requires 20 samples or fewer and that is likely to lead to larger funded projects on successful completion. A maximum of 20 x sample aliquots can be requested, free of charge, to test proof of principle or to generate preliminary data required for funding applications. Applications will be reviewed by at least one Director and/or the Tissue Bank manager to ensure sample availability. Applications will not be circulated in full to the governance panel. A limit of one application per project is in place, and additional applications for tissue will be subject to a full application. Any samples supplied are to be used in the approved project only and for the agreed duration. Any remaining samples must be destroyed at the end of the project. If the samples are needed for an extended duration, or for a purpose other than that described in the approved application, an amendment must be submitted to the Tissue Bank and approved prior to any non-approved activities taking place. We understand that pilot studies may result in further funding and project extension and ask the researchers to contact the Tissue Bank to discuss any extension requests they may have. Of note, any requests for very specialised samples or rare diagnoses where cohort numbers are likely to be low, will be asked to complete a full application.

A signed Material Transfer Agreement (MTA) must be in place prior to supply of any samples outside of Cardiff University. A signed Tissue Request Form (memorandum of understanding) will be required for all researchers, including Cardiff University.

Jurisdiction
UK
Data use limitation
Research-specific restrictions,Research use only
Data use requirements
Not for profit use,User-specific restriction
Data Controller
Welsh Neuroscience Research Tissue Bank, Cardiff University
Data Processor
Welsh Neuroscience Research Tissue Bank, Cardiff University

Demographics

Dataset Types: Health and disease

Dataset Sub-types: Neurological


Collection Sources: Cohort, study, trial, Secondary care - Outpatients, Secondary care - In-patients, Clinic