MRC Cognitive Function and Ageing Study

MRC Cognitive Function and Ageing Study

Administrative Centre

Department of Public Health and Primary Care

Institute of Public Health

University of Cambridge

Forvie Site

Robinson Way

Cambridge CB2 0SR

Telephone: 01223 330312

Fax: 01223 330330

CAMBRIDGESHIRE PROJECT FOR LATER LIFE II

BRAIN TISSUE DONATION

INFORMATION FOR DONORS

Many people are familiar with organ donation of the heart, kidneys or eyes to sustain the health or even the life of people in need. Similarly, the donation of brain tissue for research examination is a precious and unique gift; it will help us improve understanding of brain changes in ageing, some of which cause dementia, such as Alzheimer’s disease, a diagnosis which can only be confirmed by examination of the brain after death.

A very important aspect of the CFAS Study is that we ask older people not suffering from dementia to consider brain donation as well as those with dementia. This is crucial to compare changes which occur in the brains of normal older people with those who have dementia.

From the original CFAS study over 500 people have already very generously donated their brains after death, with a further 138 people who have active Declarations of Intent to donate in place.

We hope that by giving this information to you at an early stage in our research will allow you to consider brain donation at a time when both you and your family can ask as many questions as you wish before making a decision. It is most helpful if members of the family are aware of the decision you reach so that they are able to help us ensure your wishes are carried out.

The CFAS Cambridgeshire Project for Later Life Study II in which you have taken part is a large study that involves people agedover 65 in three centres in Britain these include Newcastle, Nottingham, and Cambridgeshire including 2,500 people in the Ely and surrounding areas.

What will happen in the event of the death?

A doctor will certify the death and normally issue a death certificate. If the death has to be referred to the coroner for a post-mortem examination, brain donation is still possible, we would contact the coroner for their permission to keep and examine the brain.

The study will check that there is a signed consent form agreeing to the removal and storage of the brain for research purposes.

If all agree to proceed with a donation, a limited post-mortem examination would take place in the hospital mortuary where the whole brain will be removed for research.

The body would be treated with great respect during the post-mortem and the procedure does not disfigure the body,

If you sign a Declaration of Intent to donate, but then subsequently lose the ability to make a decision; a next of kin or carer (unpaid) will be asked to act as a Consultee for you. The Consultee will be asked for their opinion as to whether you would have still wished to continue with the study and subsequent donation if you hadn’t lost capacity (Mental Capacity Act 2005).

What effect will brain donation make on funeral arrangements?

The donation is carried out as soon after death as possible, normally within 24 hours; this would not delay funeral arrangements. The donation will not cost the family anything extra, as all donation costs will be met by the study.

What will happen to the donation?

The brain would be held safely and securely in one of the studies NHS Research Brain Tissue Banks (Newcastle, Nottingham, Sheffield and Cambridge) which are all licensed by the Human Tissue Authority (HTA). The tissue will only be used for research that has been approved by a Research Ethics Committee.

Will the family find out the results of the brain examination?

Yes, if they wish to. The next of kin will receive a letter of thanks from the study teamfor their help with the donation, and asking them to indicate whether they wish to receive a report of the findings.

Types of Research

Genetic (DNA) research may lead to the discovery of genes that either predispose to, or protect against, disease. The use of your future gift may include research aimed at understanding the genetic influences on diseases related to ageing such as different causes of dementia. The results of these investigations are unlikely to have any implications for related individuals personally.

Information on the findings of such work will not be fed back to families. Significant findings would need to be confirmed in further research, and all the findings would inform policy in the National Health Service. This could include new screening and diagnostic tests available to populations who would benefit, with appropriate clinical and counselling support.

Development of new drug therapies and diagnostic tests to the point where they can be made sufficiently widely available to benefit human health can sometimes only be achieved with the involvement of the commercial sector. Neither the donor nor their family will benefit financially if the research leads to the development of a new treatment or medical test.

We are now able through international co-operation to work with approved collaborators

world-wide to advance medical research and we ask whether you would consider giving your approval to export tissue from your gift to approved collaborators outside of the UK.

Confidentiality

All the information collected by the study is completely confidential and it is stored without personal details on secure systems in compliance with the Data Protection Act 1998.

The brain tissue is stored separately and securely, the gift will continue to be extremely valuable for research for the foreseeable future. If the research comes to an end, any remaining tissue would be disposed of with utmost respect.

Data collected by the study will only be analysed by approved researchers.

This study has been considered by the Cambridge 4 Research Ethics Committee.

If you have any questions please contact any of the following: - or for further information go to our website

A Collaborating Centre in the Medical Research Council Cognitive Function and Ageing Study II

Brain Donation information sheet Version 1.2 09/07/2007