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General Information | ||
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Virtual Tour |
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The Tissue Bank Office (Text Version)
This is where all the administrative work of the Tissue Bank takes place, and is the first point of contact for both researchers and prospective donors. (Our contact details may be found here.)
The UK Parkinson's Disease Society Tissue Bank is wholly funded by the Parkinson's Disease Society of the UK (Registered Charity 258197). The Tissue Bank does not charge any of the researchers (irrespective of where they work) for the tissue that they have received. Tissue is donated to the Tissue Bank as a gift, with the Parkinson's Disease Society having ultimate custodianship of all material that it has procured.
The Parkinson's Disease Society has put in place a system of governance that ensures that the work of the Tissue Bank is regularly reviewed by an independent panel that includes experts on Parkinson's disease, tissue banking and Parkinson's disease research. In addition, the literature, consent forms and procedures that are used by the Tissue Bank have all gained approval from the appropiate national ethics committee.
We operate a prospective donor scheme. This means that people who wish to donate their brain and spinal cord to the Tissue Bank upon their death register their intent with us. For more information on this process, see below, or visit the "Information for Donors" section of the website. In order to raise the profile of the Tissue Bank, and to recruit more prospective donors, members of the Tissue Bank team (either Dr Kirstin Golding, manager, or Dr David Dexter, scientific director) give presentations at branches of the Parkinson's Disease Society (PDS) and Young Alert Parkinson's Partners & Relatives (YAPP&Rs), and to groups of PD support workers and carers. We also maintain links with PD consultants and nurses, so they can provide our details to any of their patients who may be interested in signing up. Additionally, our website is intended in part to serve as a source of information to anyone considering donating tissue to further Parkinson's research.
Please note that tissue from people without PD (known as 'controls') is just as vital as that from people with PD (and related conditions). It is important to be able to compare the disease pathology with the effects of normal aging.
In order to register with the Tissue Bank, prospective donors must fill out a consent form and a medical questionnaire. We also require a completed next-of-kin consent form. These forms are available upon request from the Tissue Bank office. We receive requests for information over the telephone, by e-mail or by post. (If a request is made in writing, we prefer that our information request form is used, as this ensures that we have all the details we need.) Also, when one of our team gives a presentation, or takes a poster to a conference, they usually take some forms with them. When we receive a request, we send out an information pack including the forms, a pamphlet about the Tissue Bank and, if available, copies of our newsletter, the Brain Bank Bulletin. (Please note that if, after requesting information, a prospective donor decides that they would rather not sign up after all, then they needn't do anything further. They will not be registered with the Tissue Bank until and unless we received the necessary completed and signed forms.) When the completed forms are received, we enter the information onto our system and assign a unique donor number. We then write back, enclosing a donor card and photocopies of the forms. The card carries the donor number and our 24-hour emergency bleep number (07659 10 45 37). The original forms are stored in a fireproof safe. If, at any time, a registered donor wishes to withdraw from our database, all they have to do is let us know. |
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Tissue ProcurementWhen notified of the death of one of our registered donors, we begin making arrangements to collect the tissue. If during work hours, the Tissue Bank can be contacted on the office telephone number (020 8383 4917). If it is out of hours, or if unable to get through to one of our team, the emergency bleep number (07659 10 45 37) is available 24 hours a day, 7 days a week. We have two cut-off times for retrieving tissue. If within 24 hours of death, we can take the tissue 'fresh'. The sequence of events in this instance is as follows:
* All arranged by a member of the Tissue Bank Team. If betwen 24 and 48 hours of death, the tissue has to be 'fixed', or immersed in formalin to preserve it as soon as it is taken. The reason for this is that the tissue deteriorates over time. If it deteriorates too badly, it is useless for research. Preserving it in formalin means that it can still be used for some projects. There are some techniques, however, that can only be used on fresh tissue, which is why we try to keep the post-mortem delay as short as possible. More than about 48 hours after death, the tissue has generally deteriorated too much to be of use for research. The sequence of events for retrieving fixed tissue is the same for fresh, up until step 6, and then it diverges:
(All arranged by a member of the Tissue Bank Team.) To ensure that we are able to collect tissue out-of-hours, we have a 24 hour 'on-call' rota. The on-call team consists of a co-ordinator and two assistants. the co-ordinator is the point of contact, and makes all the arrangements. If it is possible to take the tissue "fresh", the co-ordinator will also generally collect it (although this may fall to one of the assistants) and the assistants set up the dissection laboratory and take part in the dissection. (The co-ordinator is the primary dissector.)
If during work hours, tissue procurement is the responsibility of the tissue bank staff. Out of hours, it falls to the on-call team.
Following the procurement of tissue, the donor's medical notes are requested from their GP or, if necessary, their local health authority. These are passed on to the clinician, who uses these (and the medical questionnaire, if available) to generate a clinical summary for the patient. The medical notes are then returned. As well as containing information that may be important to researchers requesting tissue (drug treatments, for example), this clinical summary aids in the interpretation of the neuropathological findings.
Once all the necessary processing and staining for a case has been carried out by the Tissue Bank technicians (see Laboratory), the case is passed on to the neuropathologists. They assess the disease pathology and use this, together with the clinical summary, to make a diagnosis. |
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Neuropathological Report
The clinician and neuropathologists together write a neuropathological report on the case. A copy of this is sent to the donor's/next-of-kin's GP. The donor's next-of-kin is advised when the report is sent out, so they can make an appointment to discuss the findings with the GP, if they wish.
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.
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.)
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.)
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.
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.
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.
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. |
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