Version: 1.0.0 | Published: 20 Feb 2025 | Updated: 290 days ago
Welsh Neuroscience Research Tissue Bank (WNRTB)
Dataset
Documentation
Associated Media:
Description:
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.
Coverage
Spatial:
Wales, UK
Typical Age Range:
16-150
Follow Up:
Other
Provenance
Origin
Purposes:
Other
Sources:
- EPR
- Paper-based
Collection Situations:
- Cohort, study, trial
- Secondary care - Outpatients
- Secondary care - In-patients
- Clinic
Temporal
Accrual Periodicity:
Annual
Start Date:
01 September 2006
Time Lag:
Variable
Accessibility
Access
Access Rights:
Access Service:
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.
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.
Delivery Lead Time:
Variable
Jurisdictions:
UK
Data Controller:
Welsh Neuroscience Research Tissue Bank, Cardiff University
Data Processor:
Welsh Neuroscience Research Tissue Bank, Cardiff University
Usage
Data Use Limitations:
- Research-specific restrictions
- Research use only
Data Use Requirements:
- Not for profit use
- User-specific restriction
Resource Creators:
Samples provided by the Welsh Neuroscience Research Tissue Bank (approved by Wales Rec 3, Ref: 24/WA/0049)
Format and Standards
Vocabulary Encoding Schemes:
SNOMED CT
Conforms To:
LOCAL
Languages:
en
Formats:
text
Observations
Statistical Population
Population Description
Population Size
Measured Property
Observation Date
Events
Number of CSF sample aliquots available in bank (all diagnoses)
7855
sample aliquot
24 February 2025
Events
Number of plasma sample aliquots from patients with Epilepsy
2216
sample aliquot
21 February 2025
Events
Total number of other sample aliquots from pwMS (e.g. whole blood, PBMC, Tears)
463
sample aliquot
21 February 2025
Events
Number of serum aliquots available in bank (all diagnoses)
43347
sample aliquot
24 February 2025
Events
Number of plasma aliquots available in bank (all diagnoses)
52203
sample aliquot
24 February 2025
Events
number of serum sample aliquots from persons with MND
71
sample aliquots
21 February 2025
Events
Number ofDNA samples available in bank (all diagnoses)
4557
sample
24 February 2025
Events
number of DNA samples from persons with MND
67
samples
21 February 2025
Events
Total number of CSF aliquots (300ul) from pwMS
3988
sample aliquot
21 February 2025
Events
Total number of Serum aliquots (300ul) from pwMS
38004
sample aliquot
21 February 2025
Events
Total number of sample aliquots available to research from pwMS.
92184
sample aliquot
21 February 2025
Events
Number of DNA samples from patients with Epilepsy
327
sample aliquot
21 February 2025
Events
Number of serum sample aliquots from patients with Epilepsy
1911
sample aliquot
21 February 2025
Events
Total number of Plasma aliquots (300ul) from pwMS
45946
sample aliquot
21 February 2025
Events
number of plasma sample aliquots from persons with MND
94
sample aliquots
21 February 2025
Events
Total number of DNA samples from pwMS
3787
sample aliquot
21 February 2025
Persons
Participants diagnosed with Motor Neuron Disease (MND)
76
persons diagnosed with MND
21 February 2025
Persons
Total participants (all diagnoses)
3431
participant
24 February 2025
Persons
Participants diagnosed with Epilepsy
366
persons diagnosed with Epilepsy
21 February 2025
Persons
Persons diagnosed with Multiple sclerosis or other neuroinflammatory demyelinating disorder (e.g. CIS, NMO, ADEM)
2575
persons diagnosed with MS, CIS, NMO
21 February 2025