Issue 9, Summer 2008

Inside this issue:
Growing Demand for Tissue
New Research	Case Study	200 Donations	The Process
Contact Details

We have moved!

The Tissue Bank has recently moved! The Department of Cellular and Molecular Neuroscience, in which the Tissue Bank is based, moved to a new purpose built facility in London in March 2008.

Growing demand for tissue

Our new facilities have more room to store tissue, allowing us to fulfil the growing demand for tissue from researchers. We can now house the tissue in purpose built freezer rooms. There is enough space to expand and purchase more freezers in the future as our tissue supplies increase. The new Tissue Bank laboratories are all based on one floor, which means we are able to move between the laboratories to carry out different procedures on the tissue much more efficiently.

New research thanks to the Tissue Bank

Dr Roger Barker is based at the Cambridge Centre for Brain Repair. His group has been using tissue from the Tissue Bank for a number of years as part of his work into the role of genetics in Parkinson’s and the development of non-motor symptoms.

In 2006, Dr Barker requested tissue from the Tissue Bank for a study comparing the genetic material in people with Parkinson’s to those who do not have the condition (control donors). Dr Barker’s group had found a genetic variant (difference) in the structure of a specific gene that could increase the risk of Parkinson’s developing, and he wanted to use Tissue Bank donated material to study the gene.

Dr Barker’s group believed that the variant they had identified may result in changes of activity of this particular gene. In order to test this, they needed to compare the levels of gene activity in individuals carrying the genetic variant who had a higher risk of developing Parkinson’s with levels in individuals with the normal form of the gene. To do this, they needed to find out two pieces of information from each sample. Firstly, was the genetic variant present and, secondly, how much activity was taking place in the tissue.

Another research group had already used these tissue samples for a different research project, so Dr Barker was able to use this existing information together with his new research to investigate his theory. This was a great way to ensure efficient use of the valuable tissue, and collaboration between different research groups.

From the first 15 samples that the Tissue Bank provided to Dr Barker, he only found one case that had the genetic variant that he was investigating.

We have since provided Dr Barker with tissue from over 60 extra cases, and are waiting to hear how many of these contain the genetic variant.

The work of Dr Barker highlights the importance of increasing the number of donations to the Tissue Bank. Only with more samples can Dr Barker find enough cases with the variant, to enable him to observe whether there is a relationship between the gene variant and the level of activity.

The Sleep Project

More tissue from the Tissue Bank will also be required for another project that is being carried out by Dr Barker, which has just been funded by the Parkinson’s Disease Society. The study is going to investigate sleep disturbances, a common occurrence in Parkinson’s. Sleep problems may occur for many years before a diagnosis of Parkinson’s is made, and finding out what is happening in the brain will provide important clues to how Parkinson’s develops. His team will see if sleep disturbances occur in a particular group of people with Parkinson’s and if there is a pattern of cell loss in the brain. The information obtained from the examination of the brain samples will be compared with the clinical data that is obtained from other donors.

Dr Barker also wants to investigate whether sleep disturbance in Parkinson’s reflects a more fundamental problem in the normal 24-hour cycle of our bodies, and how the brain change during this cycle. He will use tissue that has been donated to the Tissue Bank from donors with different stages of Parkinson’s, and also ‘control’ tissue (from people without Parkinson’s) to find out if the ‘clock’ genes involved in regulating our 24-hour cycles are different in various regions of the brain and if these are related to the clinical symptoms of the condition.

Case Study: Christine Bainbridge

Christine Bainbridge talks to Kirstin Golding, Tissue Bank Manager, about why she decided to register with the Tissue Bank.

Christine doesn’t have Parkinson’s herself, but realised how important it was for her, as a person without the condition, to sign up to the donation scheme as well as her husband Martyn who developed Parkinson’s in his 30s.

“My husband and I both signed up from the beginning, as soon as we heard about the Tissue Bank,” she said. “I am the one who sorted everything out but my husband signed the form.” “I think registering with the Tissue Bank is very important for future generations.” Christine also mentioned that Martyn’s grandmother had had Parkinson’s, and while with most cases of Parkinson’s there isn’t a genetic link, she feels it is very important to find out more.

The whole family are behind the idea of donating tissue: “My son and my husband’s stepson are also registered with the Tissue Bank,” she said. Christine has also mentioned to friends and other family members that they should think about donating in the future.

I asked Christine why she thought people should register with the Tissue Bank and she said: “I just think it is a great idea – one brain can go a long way.” Tissue from just one brain can be used for dozens of different research projects right across the world.

If you would like to share your story and reasons for registering with the Tissue Bank, or tell us why your loved one decided to do so, please contact pdbank@imperial.ac.uk or call Kirstin on 020 7594 9732.

Over 550 donor questionnaires have been returned to us by those registered with the Tissue Bank, giving us valuable information on lifestyle, the clinical course of Parkinson’s and drugs taken. If you have not already done so and would like to complete the questionnaire, please return to the above address.

Tissue Bank reaches 200 donations

The Tissue Bank has now collected over 200 tissue donations and over 1,000 people have registered their wish to donate. This is a fantastic achievement and means that we have already been able to supply tissue to over 60 research projects into various aspects of Parkinson’s.

Despite the fact that we have reached this impressive landmark, it is still vitally important that we register more donors and collect more tissue. We are still collecting tissue from those with Parkinson’s at a quicker rate than that from people without Parkinson’s. It is important that we collect more brain tissue from people without Parkinson’s or another neurological condition as most research projects need this ‘control’ tissue to see the differences in the brains of people with Parkinson’s.

After each tissue donation, we analyse the tissue to confirm the diagnosis and clinical information we have been given. When we looked at the neuropathological diagnosis and clinical information from the first 126 donations we found a range of diagnoses including:

• Parkinson’s disease

• Parkinson’s disease with dementia

• Dementia with Lewy bodies

• Multiple system atrophy (MSA)

• Progressive supranuclear palsy (PSP)

• Parkinson’s disease and Alzheimer’s disease

• Dementia with Lewy bodies and Alzheimer’s disease

• Progressive supranuclear palsy and Alzheimer’s disease

• Young onset Parkinson’s disease

• Young onset dementia with Lewy bodies

• Essential tremor

• Frontal temporal lobar degeneration with motor neurone disease.

We can only provide researchers with the tissue they need to study different aspects of Parkinson’s and related disorders and further their understanding of what happens in the brain as Parkinson’s develops if we continue to receive an ongoing supply of tissue. You can help increase understanding of Parkinson’s by registering with us and by donating your tissue after you die.

Up to the end of 2007, we had collected 205 brains, of which: 192 were from donors with Parkinson’s and related disorders 3 were from donors with other neurological disorders 10 were from ‘control’ donors (people without Parkinson’s or another neurological disorder) 1,112 people had registered with the Tissue Bank by the end of 2007.

The tissue donation process

A loved one passing away is a very difficult time for the family. There is a lot to organise and contacting the Tissue Bank is another thing to think about. We would like to reassure registered donors and their relatives that we do our utmost to make the arrangements as easy as possible for families during this tough time. The Tissue Bank team is on 24-hour call so we can ensure that everything is put in place quickly to receive the donation and carry out the wishes of the registered donor Relatives often ask us what they will have to do when a member of their family who is a registered Tissue Bank donor passes away. We thought it would be helpful to summarise what happens here so that you have the information to hand when you need.

Who do the family need to contact when a loved one passes away?
When someone dies, the death has to be certified by a doctor: either a GP or a hospital doctor. When this happens at home, the family will need to contact the GP regarding the death. If the death occurs in a nursing home or a hospital, the staff may well do this for the family.

The family will also have to decide upon funeral directors and contact them about the death.

What happens if the death is unexpected?
It may be necessary for the police to attend and the death may be referred to the coroner. The death may also be referred to the coroner if the deceased has not recently been seen by a doctor if the cause of death is unknown, if death was caused by an industrial disease, such as asbestos related diseases, or if the patient was undergoing an operation or did not recover from an anaesthetic.

If the case is referred to a coronor it may delay or prevent us from procuring tissue.

What happens if the deceased is to be cremated?
Two GPs are needed to complete the statutory paperwork. The GP who attends the deceased to certify the death needs to complete the first part of the paperwork, and another doctor completes the second part.

When should I contact the Tissue Bank?
You don’t need to wait for the doctor to certify the death before contacting the Tissue Bank. We can start making arrangements for the donation before the doctor has completed the formal paperwork. However, we won’t be able to finalise the arrangements for transporting the body to the hospital for the tissue donation until the death has been certified by a doctor.

Can we contact the Tissue Bank before the person’s death?
In some cases, if the death is expected, the Tissue Bank can start to make arrangements before the donor passes away, as long as the family are happy for us to do so.

Who can contact the Tissue Bank when a donor passes away?
The family can contact us directly on our emergency number or, if the family wishes, they can ask someone else to call on their behalf, as long as we have consent forms signed by the donor and the next of kin. The Tissue Bank is often contacted by nurses on wards, staff at nursing homes, GPs or funeral directors for example.

What information will the Tissue Bank team request?
When a member of the Tissue Bank team responds to the bleep, they will require certain information before they can make arrangements for the donation. They will need to know the full name of the donor (and donor number, if known) and confirm that the deceased has been registered with the Tissue Bank. We will also confirm that the family agree to go ahead with the donation and record the location of the donor.

Is there any other information the Tissue Bank may ask for?
If the family has decided on a funeral director, contact information can be helpful. The Tissue Bank team may also ask you for details about the time and cause of death.

What happens to the body before the donation?
If possible, the body should be refrigerated by the funeral directors or hospital as soon as possible after death. This will help keep the body in the best condition possible for the donation while the arrangements are being made.

How quickly does everything happen regarding the donation?
As the Tissue Bank aims to retrieve tissue within 24 hours after death, all the arrangements are made as quickly as possible. It is important that you tell the certifying GP about the wish of the deceased to donate tissue – this will ensure there are no unnecessary delays. After the tissue has been retrieved, the body is quickly returned to the funeral directors so that funeral arrangements can take place.

What if someone had not got around to registering with the Tissue Bank?
If someone passes away who had not yet registered with the Tissue Bank, it is still possible for a donation to take place if the family believes it was the person’s wish to donate their tissue. The family would need to contact the Tissue Bank as soon as possible after the person’s death.

We would ask for a fax number or email account which we can send consent forms to. Once we have the signature of the next of kin faxed or scanned and emailed back to us we can arrange the donation.

On behalf of the Tissue Bank and the Parkinson’s Disease Society, we would again like to thank all of those that are registered with us, and particularly the families of those who have donated tissue, for your contribution to support Parkinson’s research.

© Parkinson’s Disease Society of the United Kingdom, 2008. Charity registered in England and Wales No. 258197 and in Scotland No. SCO37554.
A company limited by guarantee, Registered No. 948776 (London) Registered Office 215 Vauxhall Bridge Road, London SW1V 1EJ