How we look after your samples and data

Your samples are extremely important to us and future research, so we make sure that they are well looked after.

What the Biorepository does

A Biorepository, or biobank or tissue bank, is a facility that collects, stores and manages samples of tissues. It distributes these to researchers who need the samples for clinical research. We only share samples with researchers who pass strict ethical guidelines and where we are confident the research will benefit patients.

Samples are vital for understanding the causes of disease and the development of new treatments. All of this relies on the people consenting to donate tissue samples.

Rachael Stanley is the manager of the Norwich Research Park Biorepository and her role is to ensure that the samples are collected ethically and lawfully, with your full consent and that your samples are correctly logged and stored.  

Samples

We keep most of the samples in freezers. These are monitored 24 hours a day and any temperature fluctuations trigger an alarm. Diagnostic samples from surgery or biopsies are put in a preservative and then embedded in wax blocks. These are then thinly sliced so they can be examined under a microscope. This allows a diagnosis to be made on a tissue, but for some research projects this technique is too harsh. In this case the tissue can be quickly frozen in liquid nitrogen. This preserves the tissue structure and components for long term storage in our freezers.

Researchers sometimes need tissue that hasn’t been fixed or frozen. We can facilitate the consent of patients and the collection of tissue and then deliver it straight to the lab bench. This opens up a wider range of potential uses for your sample.

Data

As well as collecting your sample, we collect some data, such as your age, gender, or medications. This is because these may affect the research results.  We give each sample a unique number, so that the researchers cannot identify you. This protects your identity whilst giving the researchers the data they need to get the most from their studies using your samples.

Dr Jo Brooks is a gastroenterologist and clinical researcher, and relies on tissue samples and the associated anonymised data for her research. “Using anonymised data allows us to share that data with colleagues who are doing excellent research, to get really important details and to get more out of the original research and that has a positive benefit directly for patients.”

The only time the researchers might need to identify a sample is if they discover something of clinical significance in a particular sample. If this happens they will contact the Biorepository with the sample’s unique identifier. The Biorepository team will then access the database and alert the relevant clinical care team.

We keep your data on a secure database behind the NHS firewall at the Norfolk and Norwich University Hospital (NNUH). Access to this database is highly restricted. The researchers cannot access this data or get any identifiable information.

Anthony Lundrigan is Chief Information Officer for both the Norfolk and Norwich University Hospital and the Norwich Research Park Biorepository.

His job to ensure that the data is kept securely and complies with the highest standards for data security. We will only use your data for your care and, with your consent, for research

It is your data, and you always have the right to know what data we hold, and for what purposes we are holding it. You have the right to remove that data at any time.

A Caldicott Guardian oversees how we handle your data and samples. They represent you and other patients. All NHS organisations must have a Caldicott Guardian and in this senior role they ensure seven key principles apply to the handling of patient data

Ethics

An independent ethics committee reviews every research proposal. This ensures that all research is ethical and follows strict protocols.

Daheemanth Vanginialla is a junior doctor at the Norfolk and Norwich University Hospital and he is also part of the UEA’s Faculty of Medicine and Health Ethics Committee.

This committee ensures that proposals for research projects involving human participants meet the highest ethical standards. These standards protect the safety, dignity and rights of research participants.

The ethics committee is made up of representatives of different clinical areas, as well as lay members, ensuring fair representation from the wider community, including the public, researchers, and clinicians.

The committee looks at the entire proposal in detail and the questions the researchers are trying to answer. They scrutinise any documentation associated with the project, especially material for patients or participants. If it meets the criteria for ethical approval, the research is allowed to go ahead. If not, the committee will provide feedback  about changes that would allow the research to go ahead.

This gives you the reassurance that any research project in which you participate will be ethically sound and protect your rights, safety and wellbeing.

Once we and the ethics committee are satisfied that the researchers have answered key questions of ethics fully, we work with the research teams to provide them with the appropriate samples. If we already have tissue banked in the Biorepository, we will release that. If not, we will help collect new tissue by identifying suitable patients or participants and seeing if they will consent to donating their tissue.