Register your interest in UK-based brain tumour research
There are some websites where people with and without any kind of medical condition can register their details, so that researchers can get in touch if they begin a suitable study. The greater the number of brain tumour patients and caregivers that volunteer to participate in such studies, even if the research is not directly brain tumour specific, the louder the voice of our community and the more likely we are to inspire positive change in, for example, brain cancer care.
It may even be that by participating in a large, population based study that is looking at the links between gut health and all disease, that brain tumour patients could provide new opportunities for insights that have not yet been discovered by researchers focusing purely on neuro-oncology.
Research can range from answering phone or online surveys about the quality of brain cancer care that you have received in your area, to more medical based research. Some websites ask you to donate a blood, saliva or stool sample, whilst others may offer the change to test new and innovative medical devices or phone apps. Occasionally, you may be offered payment in return for participation, to cover travel costs for example.
Registrants always have the option to accept or decline invitations to participate in new research that may begin, and each website requires a slightly different type of information for the registration process. You are welcome to register on one or more of the websites listed below, if you fulfil the registration criteria, are happy to provide the requested information and would like to get involved.
The Scottish Health Research Register (SHARE)
Welcomes registrations from people in Scotland aged 11 and over. As well as contributing basic health data, participants can consent to allow SHARE to analyse leftover blood following any routine clinical testing that may be undertaken as part of their brain tumour management or treatment protocol: the blood is stored carefully, only used for research that has been ethically approved, and donors are not identified so the researchers won't know whose blood they are using.
Share is part of the Scottish National Health Service Research and NRS Scotland, and is intended to improve the quality of healthcare research in Scotland by addressing problems of recruitment. It has the total support of Government and is part of the NHS.
An opportunity for everyone in Wales aged 16 or over to take part in research, whether or not they have a brain tumour. Everyone is asked to complete a short questionnaire as they register, and then follow-up questionnaires every six months. Researchers can then search the database and contact people who fit the criteria for their research studies. Naturally, the more people with brain tumours who are registered, the easier it would be for researchers to begin a study within this patient group.
Healthwise Wales is funded by the Welsh Government and led by Cardiff University.
A register for any adult (18 and over) living in the North West London boroughs of Kensington and Chelsea, Hammersmith and Fulham, Westminster, Brent, Harrow, Hillingdon, Hounslow and Ealing. All you have to do is supply some basic information as you register.
The service was founded by Imperial College Health Partners, and Imperial College researchers are well respected for having published ground-breaking brain tumour research. Discover is a partnership of NHS organisations and universities in North West London, in association with The Scottish Health Research Register (SHARE), and is run by Chelsea and Westminster Hospital NHS Foundation Trust.
National Institute for Health Research (NIHR) Involve
This database provides opportunities for public involvement in NHS, public health and social care research throughout the UK and is funded by the UK Government Department of Health and Social Care.
Rather than submitting your details to the database you use the search tools to find an opportunity related to brain tumours, or to cancer care or treatment in general, that interests you.
By clicking on the ‘contact details’ for that research project, you can then contact the relevant person for more information. You can also sign up for an email alert whenever a new opportunity is added that matches your interests.
National Institute for Health Research (NIHR) BioResource
National Institute for Health Research (NIHR) BioResource is a panel of thousands of volunteers across the UK who are willing to participate in research investigating links between genes, the environment, health and disease and is funded by the UK Government Department of Health and Social Care.
The more brain tumour patients who participate, the more meaningful such population based data becomes because then patterns amongst tumour types, for example, become easier to identify. In turn, this means that there is a greater likelihood of researchers discovering what, if anything, in our environment could be causing brain tumours.
Participants are asked to donate a blood or saliva sample from which DNA details can be extracted and recorded on the database. They are also asked to complete a healthcare questionnaire, a consent form so they can be matched to a specific research study, and also need to grant access to their medical and healthcare records. However, identities are protected by data being anonymised on the main database.
National Institute for Health Research (NIHR) Local Clinical Research Networks
The Local Clinical Research Networks support clinical research infrastructure throughout England, which is working towards increased access for all patients, including those with brain tumours, to new and better treatments in the NHS and social care.
From their home page you can click through to local Clinical Research Networks (CRNs), each of which offers different opportunities to get involved in research in your local area. All CRNS are connected back to the NIHR Be Part of Research database that you can also search for a study related to your health condition.
British Gut is an open-source crowd-funded project run by The Department of Twin Research at King’s College London in conjunction with The American Gut project. This means that you need to pay in order to participate in this study, with the money contributing to the funding for the research.
The aim is to uncover the microbial content within the guts of British individuals, and the team are particularly keen for brain tumour patients to become involved: if they are able to recruit around 50 patients for a particular type of brain tumour, the data would become rich enough to lead to the publication of a research paper.
The data that they collect will indicate how lifestyle choices and diet influence the gut microbiome, and therefore how we can potentially alter it to reduce disease and other health related problems. As yet there is no strong evidence that diet can influence brain tumours, but perhaps this project may uncover new information about the gut-brain link that will open up new options for brain tumour patients in the future.
Regardless of how many brain tumour patients they are able to recruit, the British Gut study will produce a large-scale collection of anonymised human samples and lifestyle information for medical researchers to access, and provides each participant with a snapshot of their own gut microbes. However, they do not provide any clinical interpretation and you will not be given any dietary advice as part of this project: but you are providing foundational data for a greater understanding of the potential connection between gut health, diet, lifestyle factors and brain tumours.
Reporting drug and treatment side effects in the UK
The UK’s Yellow Card Scheme is run by the Medicines and Healthcare products Regulatory Agency (MHRA) in order to track the long-term effects of all medicines and medical devices, as well as other health-related products such as vaccines and e-cigarettes. If anyone experiences a side effect due to any aspect of the brain tumour treatment, they can report it via the Yellow Card Scheme home page here.
These reports are evaluated alongside clinical trial data, medical literature and data from international medicines regulators, to identify previously unknown safety issues. If a new side effect is identified, the safety profile of the drug or treatment is investigated, and compared to the side effects of other ways to treat the same condition. The MHRA then takes action to ensure that treatments are used in a way that minimises risk, while maximising patient benefit.
How to donate a brain tumour sample for research in the UK
How can a brain tumour sample be donated for research in the UK?
The donation can be made as part of any neurosurgical operation that is required for the diagnosis or treatment of a brain tumour. This includes both taking a small sample (biopsy) for diagnosis, and an operation to remove as much of the tumour as possible.
The medical team need to ensure that the patient or their consenting relative signs the relevant part of the consent form that is always completed before any operation can take place so that permission is specifically given for the brain tumour sample to be used for research.
How much tissue is taken if it is donated to research?
Donating tissue to research would not entail any extra tissue being taken during surgery. It would not affect treatment, the length of the operation, the hospital stay or time required for recovery.
Enough tissue would be kept by the hospital where the operation took place in order to ensure that an accurate diagnosis can be made, both initially and also for any future analysis that may be required to guide treatment.
It is only tissue that is surplus to these requirements that would be donated to research, and even a small amount of tissue can be very valuable. In fact, even this extra brain tumour tissue is usually stored at the hospital where the operation took place until it is requested by a research team, who may be working anywhere in the UK – or sometimes in laboratories elsewhere in the world.
Will donating my brain tumour tissue to research affect my treatment?
No, your treatment takes priority over any tissue donations for research.
How is brain tumour tissue stored when it is donated for research?
The most common way for brain tumour tissues to be stored is in paraffin blocks. This method has been used for many years and samples stored in this way are still very useful for researchers.
However, flash-frozen brain tissue is required for many developing forms of genetic analysis, and this is not available at every hospital that undertakes neurosurgery. Hospitals need space to house the freezers, and both staff and expertise in order to collect, record and store such samples.
How can researchers find brain tumour tissue that has been donated for research?
Brain tumour samples are recorded carefully by the hospital where the sample was collected. Where the resources are available, this includes linking the sample to anonymised clinical records so that information such as the age, gender, diagnosis, treatment and response to treatment for each patient can be shared with researchers. It may be that patients are also asked if results from routine blood tests can be linked to the tumour sample as well.
Brain Tumour Research provides funding to BRAIN UK, the world’s first virtual brain bank, who co-ordinate the information stored by all the NHS hospitals throughout the UK. BRAIN UK provides information and support to researchers wanting to access those samples for research: so for example, they can identify where samples for a particular tumour type are stored and put the researcher in touch with the neuropathology department who has the samples. They also have a fast track ethics service to help the research to begin as quickly as possible.
Can patients or their families trace which research has used the brain tumour sample that has been donated?
Unfortunately, brain banks are unable to supply this information. Occasionally when a patient signs a consent form, it may be that they are consenting for their tissue to be used in a specific research project. Details of that project would be supplied at the time of consent and could, therefore, be followed up in future.
All tissue donated, stored and used for research in the UK is closely regulated by the Human Tissue Authority to ensure that a strong code of ethics applies to every stage of the process, to ensure that all tissue samples support high-quality research.