All consent forms and related paperwork are stored in secure, fire-proof filing cabinets. Personal details of our tissue donors are never divulged to researchers receiving tissue or anyone outside the Tissue Bank. The databases that store details of individuals that have requested information, registered as donors and those that have donated tissues are kept on a secure (stand-alone) computer that is only accessed by Tissue Bank staff.

Anonymised case data is entered into an online case database. Access to this database is restricted to Tissue Bank staff and researchers who have received tissue. Researchers are only allowed to view cases from which they have received tissue. Information stored in the database includes clinical details, macroscopic observations, photographs from the dissection and the neuropathological diagnosis.

Tissue Requests

Scientists wishing to request tissue for research into PD and related disorders must fill out one of our Tissue Request Forms. Each tissue request is assessed by an independent scientific panel. Once approved, the tissue will be supplied to the researcher, who will also be given access to the relevant information in the case database. (Please see the Laboratory section of the tour for more information on the supply of tissue to researchers.)

Brain Bank Bulletin

Twice a year, we send out a newsletter to all our registered donors (and their next-of-kin), Parkinson's Disease Society branches, PD nurses and consultants and more. (If anyone wishes to opt out of receiving this publication, then they simply have to let us know.)

Open Day

Every year (usually in March or April), we hold a Tissue Bank Open Day. This is primarily aimed at registered donors and their next-of-kin, but everyone is welcome. The day involves talks and presentations, a tour of the labs and a microscope session with one of the neuropathologists.

Publicity

As mentioned above, members of the our team travel to PDS branches, etc, to give presentations. They also take posters to various research meetings (such as the annual Special Parkinson's Research Interest Group (SPRING) conference), to raise awareness of the Tissue Bank among the scientists who may wish to request tissue from us. Every year, we have a stand in the Brain Awareness Week exhibition hosted by the Science Museum. Articles about the Tissue Bank have appeared in various publications, and members of the team have been interviewed on national television and radio.

Website

The tissue bank website has general information about who we are and what we do. There are also sections aimed specifically at potential donors and at researchers who might request tissue from us, with instructions for how to sign up, or how to request tissue, respectively. Finally, there is some general information about Parkinson's disease.

The website is updated regularly with news and events such as upcoming branch talks, newsletter publication, open days and Parkinson's Disease Society activities.

If you have any feedback regarding the website, please let us know.

Statistics and Tissue Bank Reports

At the end of every month, all the statistics for that month are compiled and checked. These include figures such as the number of information requests, new donors, new cases, tissue requests, etc. Every year, these and other statistics are used to generate a Tissue Bank Annual Report, which is presented to the Tissue Bank Board of Directors and the Parkinson's Disease Society.