Patient and Public Involvement
As well as needing volunteers to take part in dementia research studies, scientists also need people to provide input on how best to design and carry out their research. This is called public and patient involvement, or PPI.
People in Research is a database listing research projects and organisations that are looking for members of the public to get involved in their work. This could include advising on ethics, peer reviewing research proposals and protocols, assisting with the development of studies and more. Visit www.peopleinresearch.org or contact them on 02380 651 088 for more information.
Alzheimer’s Research UK uses Lay Research Volunteers to review grant applications from scientists who apply for grant funding for their project. The process involves reading a selection of application summaries and completing a short review form. We ask Lay Research volunteers to comment on whether studies are worthwhile and are addressing issues that are important for people affected and their families.
Be part of research
There are other opportunities to take part in dementia research and research into other conditions through Be Part of Research. Be Part of Research is a search engine for clinical trials taking part in the UK, you can search by location or disease type. You can explore the opportunities available on the Be Part of Research website.
Brain donation is a generous thing to do and means that many scientists and lots of different projects can benefit. To donate your brain, you can get in touch with your nearest brain bank to find out about registration and whether they are currently arranging future donations. Some tissue banks will be full and unfortunately unable to accept donations. Arranging brain donation needs to be done while the donor is still alive, as the person needs to have consented, and the actual brain collection is required within 72 hours following death. If you register to donate your brain for research it’s best to let your next of kin and family know, and to mention it in your will.
You can find which brain bank is closest to you and find more information about donating your brain via the Human Tissue Authority website
In 2007 Alzheimer’s Research UK, in partnership with Alzheimer’s Society and the Medical Research Council (MRC) launched Brains for Dementia Research. This project involves a network of brain banks across England and Wales which requires volunteers to complete memory and thinking tasks every two years until they die. This means that scientists are able to collect important information about the donor as well as receiving their brain. This is helping to build a better picture of what is happening in the brain both during normal ageing and dementia.
The Brains for Dementia Research project has been very popular, with nearly 3500 volunteers, and has now reached capacity so is no longer taking new registrants. If you would like to find out more about the project and the impact it has made to dementia research, you can find out more on our Brains for Dementia Research website.