Background to the IDB
Traditionally, researchers devised a hypothesis, obtained funds and ethical permissions, and finally collected and tested the samples for an evaluation of the premise. This cycle was repeated with an inevitable waste of valuable clinical material at each stage. In contrast it is recognised that biobanks confer significant advantages over this model, they:
- maximise usage of clinical donations
- can supply complete cohorts of biological samples and clinical data
- can additionally provide ethical and regulatory permissions.
This allows research to proceed more rapidly and efficiently, enabling a wide-range of studies to be performed on the same populations. Indeed, biobanking was hailed by Time magazine in 2009 as ‘one of the ten ideas which are transforming the world right now’.
There are many different types of biobank and the IDB can be classified as a systemic biobank. That is one that is collecting valuable clinical specimens without one specific research programme in mind. Indeed, with the rate of progress in molecular biology the IDB uses ‘open’ (or generic) consent in the recruitment of volunteers as the technology and questions which may be asked in the future are yet to be defined. This means that IDB samples can be used for virtually any type of medical research. The only exceptions being research into: therapeutic cloning, reproduction, stem cells, cosmetics, animal investigations.
Since being established in late 2006 the IDB has collected and distributed clinical samples from patients infected with various infections, primarily to local researchers. By mid 2010 a critical mass of samples has been accrued and increasingly, samples are now being released to national and international researchers. Whilst the throughput of samples can vary considerably, dependent upon recruitment levels, for most of 2010 the IDB was processing up to eight pints of blood per week. A secondary function of the IDB includes facilitating high-profile research projects such as the HIRD study. These samples are initially restricted for use solely by the HIRD researchers, however all participants agreed to any excess samples being available for IDB studies at the termination of the study.
The IDB is a relatively new biobank yet has achieved inexorable year-on-year growth which means it will be of increasingly value to researchers both nationally and internationally.
Information for Volunteers
We would like to restate the information in the information sheet and re-assure you that your personal details remain confidential and are stored at the clinics, not at the biobank. The IDB and researchers testing your samples only have a code (not your NHS number) which links your sample to clinical measurements of disease parameters. If researchers discovered anything from your sample that could be important to your future health, or treatment, the IDB will inform Doctors and Nurses at the clinic and they will be able to ‘break’ the code and contact you. We operate under the provisions of the 1998 Data Protection Act and take great care to make sure that even your anonymized medical details cannot be accessed by anyone other than bona fide medical researchers. The data are all kept on secure computers with no public access using encrypted password protected files. Back-ups of these data are held on a secure server and on military-grade memory sticks which self-destruct all data if the wrong password is entered. Donated samples are also only provided to established medical researchers.
Volunteers can decide at any time that they have changed their mind and wish to opt out of the IDB project. In such cases they are able to ask for any previous samples donated to be destroyed or just to stop giving any further samples. An important point is that as a patient whatever your decision with regard to volunteering to donate samples to the IDB this will have absolutely no bearing upon your treatment now or in the future.
Should you have any questions please contact either your regular research nurse or the IDB directly using the e-mail and telephone numbers provided on the staff page.