• Why?

• Who?

• What tissue?

• Other donor schemes

• Tissue retrieval

• Afterwards

• Research

• Storage

• Disposal

• Funding

• Medical history

• Confidentiality

• Changing your mind

• What now?

• The forms

Who Funds and Oversees the Work of the Tissue Bank?

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.

Does the Tissue Bank Need to Know my Medical History?

Since it is essential to relate studies on samples of tissue to the medical history of the tissue donor, we need your permission to access your medical records. You give this permission by signing the "consent for the procurement of tissue" form available upon request. Once we have collected your tissue we will contact your general practitioner (and consultant if necessary) and ask to consult you medical records. The information will be used to prepare a summary that will be supplied to the researchers, in an anonymous manner, who have received samples of your tissue. This medical summary will also help our neuropathologist to interpret the findings on examination of your brain and spinal cord. The neuropathology report that is prepared will be sent to your next-of-kin and general practitioner.

Will my Personal Details be Kept Confidential?

All consent forms and related paperwork are stored in secure 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 on a secure computer that is only accessed by Tissue Bank staff.

What if I Do Not Wish to Proceed or Change my Mind Once I have Registered?

We understand that the donation of tissue is not right for everyone. If you do not wish to register you do not have to do anything further. Thank you for reading through these pages and we hope that you have found the information interesting.

If at any time after having registered you change your mind and for whatever reason decide to withdraw your consent, just let us know (by telephone, letter or e-mail) and we will return your original consent form and remove your details from our computer database.