Every year, around 120 people donate their brain and spinal cord tissue to help advance research on multiple sclerosis and Parkinson’s disease.
The MS and Parkinson’s Tissue Bank at Imperial supports researchers working towards better treatments and, ultimately, the prevention of these conditions. We spoke to Rory Türkmen Smith, Tissue Bank Engagement Manager, about his work facilitating these precious donations and supporting families through one of life’s most difficult moments.
How would you explain the importance of the Multiple Sclerosis and Parkinson’s Tissue Bank mission – both in terms of its societal value and its contribution to scientific research?
The tissue bank is a dedicated service which allows willing donors to donate their tissues to research, specifically focused on Parkinson’s and MS. The tissue bank is approved to be an ethical framework for scientists in the UK to undertake research. All requests to use tissue from the tissue bank are reviewed by scientific experts and people living with MS/Parkinson’s. This is a joint venture between MS Society, Parkinson’s UK and Imperial, and is separate from other donation schemes such as NHS organ donation and whole-body donation – without the brain bank initiative, it would simply not be possible for someone to donate their brain to research. With funding directly from MS Society and Parkinson’s UK, we are the dedicated brain bank for people living with Parkinson’s and MS.
The tissue bank consists of a core team of 6. The Tissue Bank Manager, Dr Djordje Gveric, 4 lab technicians (Marta Garcia Camba, Alayna Jordan, Leyna Silveira and Eleanor Dakin) and me, the Tissue Bank Engagement Manager. The brain bank facilitates roughly 120 brains a year, providing tissue to at least 50 research projects each year.
Can you walk us through the donation process – from registration to sample use – and how the Tissue Bank ensures that the wishes of donors and their families are honoured throughout?
To allow the donation to happen, we need 7 groups of people to work together promptly and harmoniously. A donor’s family, funeral directors, GPs, medical examiners, mortuary department, courier and tissue bank technical team all have to be pushing in the right direction to make the donation possible. When a donor dies, the tissue bank is informed via the emergency phone number, and the donor is taken into the care of a funeral director. The donor will remain in the care of the funeral director until the donor’s GP and a medical examiner agree on a cause of death and discuss this with the family.
Once the death certificate is complete, the donation is legally allowed to proceed, and the individual is taken to a local hospital where the donation will take place. The donated tissues will then be delivered by a dedicated medical courier to the lab at Imperial, where the technical team will be waiting to jump into action to preserve the tissues for research.
The Tissue Bank has provided tens of thousands of samples to hundreds of research projects. Can you share a story or example of a project that made a significant breakthrough thanks to these donations?
The early work, which led to ocrelizumab (a highly effective disease-modifying treatment for MS), was performed on tissue donated to the MS Society Tissue Bank. A prime example of research in the lab leading to a new treatment for MS. Work on donated tissue elucidated the role of B cells in MS, which provided a novel target for drugs.
You’re the Engagement Manager for the Tissue Bank. Tell us more about your background and what drew you to this particular role.
I have worked in biobanking since 2018 in various roles, starting at Barts Cancer Institute, attending clinics, consenting patients and taking blood samples, followed by a role as research technician being involved in sample preparation for research. Prior to this role as Tissue Bank Engagement manager, I was a Cryostorage Facility Manager looking after samples in a liquid nitrogen facility – however I missed working with patients, which is what drew me to the brain bank. Brain donation is a particularly special area of biobanking and can really be seen as legacy which the person has left behind to help understand neurological conditions and work to find better treatments for them. It is a real honour to be involved in this work, and I really enjoy helping families fulfil their loved one’s wishes in these otherwise very difficult moments.
What kind of engagement have you been prioritising so far?
A real focus of the brain bank at the moment is to increase the diversity of our donor population. It is vital we understand MS and Parkinson’s in all people and how they may vary in individuals with different ethnicities. We have been working with MS Society and Parkinson’s UK to visit underrepresented ethnic groups by open days and meet and greets around London. Our goal is make people aware that brain donation is a different process from NHS organ donation and whole body donation to medical schools; often, many people may be happy to donate their brain and spinal cord tissues, but are not aware that it is a separate scheme.
What has been the most challenging part of your role so far? And what’s been the most rewarding moment in your work with the Tissue Bank?
The most rewarding and the most challenging part of the role are the same thing – that act of facilitating the brain donation. It requires 7 groups of people all working together to facilitate someone’s last wish, all within 48 hours. It can be a very stressful process but when hearing what it means to families after a successful donation, it is so, so rewarding.