Diabetes Genes

Genetic Beta Cell Research Bank

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Lead Site, Exeter

University of Exeter Medical School, Royal Devon & Exeter NHS Foundation Trust

Overall Responsibility:


Professor Sian Ellard
Professor of Molecular Genetics
Royal Devon & Exeter NHS Foundation Trust
Barrack Road
Exeter EX2 2DW

sian.ellard@nhs.net

 

Nursing Management:


Dr Bridget Knight
Research Midwife
NIHR Exeter Clinical Research Facility

b.a.knight@exeter.ac.uk
Tel: 01392 408172

Responsible for overseeing recruitment of new volunteers and samples donated specifically for research purposes.

Research Reference Numbers

IRAS:
231760

REC:
Wales Research Ethics Committee 5
17/WA/0327

CRF:
110

The Genetic Beta Cell Research Bank (GBCRB) is a tissue bank with over-arching ethics to carry out research into the mechanisms and genetic causes of diabetes and other beta cell disorders.

The Genetic Beta Cell Research Bank (GBCRB) is a tissue bank with over-arching ethics to carry out research into the mechanisms and genetic causes of diabetes and other beta cell disorders.  It stores samples from diagnostic archives and residual samples from research activity where enduring consent has been given.  The GBCRB ensures effective guardianship of these samples, with a Steering Committee that reviews all requests to use samples and associated data to ensure they are sensibly used to improve the diagnosis, care and treatment of genetic diabetes.

The Royal Devon & Exeter NHS Foundation Trust Molecular Genetics Laboratory is a world leader in monogenic diabetes diagnosis and receives samples from over 90 countries.  Patients referred to the service currently provide consent for their samples to be analysed to determine the genetic cause of their diabetes.  A genetic diagnosis is found for around 33% of patients tested. If, however, a genetic cause is not found, suggesting a new causative gene or a non-monogenic form of diabetes, the analysis of samples becomes part of a research question.  If no clear diagnosis is found, DNA samples are usually stored and re-analysed in the future when new genes have been discovered.  Samples in these storage areas may fall between research and diagnostic governance procedures.

Informed Consent for Samples/Data to be stored in this Research Bank





Eligibility and Inclusion Criteria

  1. Any person may donate samples originally taken for diagnostic purposes. In such cases there are no exclusion criteria as the burden to the donor is minimal.
  2. Samples primarily for research purposes will be collected with consideration to minimise burden.  Where possible, saliva samples or buccal swabs will be used to obtain DNA from children or adults lacking capacity to consent.

Patients

If you are a patient and would like more information, please click here.

Professionals

Our referral forms includes informed consent/assent statements.

For information about referring to the Genetic Beta Cell Research Bank and patient information sheets, please click here.

It is accepted that these are not as detailed as a research study consent form, but aim to provide sufficient evidence of informed consent and/or assent by the patient and/or consent from a guardian or consultee, without burdening the patient and their clinician with excessive administration during a time-limited clinical appointment.