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Contact the study team using the details below to take part. If there are no contact details below please ask your doctor in the first instance.
Sandhya
Trichinopoly Krishna
sandhya.t.krishna@doctors.org.uk
Mr
Conor
Mallucci
conor.mallucci@alderhey.nhs.uk
Sandhya
Trichinopoly Krishna
sandhya.t.krishna@doctors.org.uk
Benign neoplasmsMalignant neoplasms of eye, brain and other parts of central nervous system
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BACKGROUND
Brain and central nervous system tumours are the most common cause of cancer death in children under 18. Surgery is usually the first line treatment for these tumours. Reporting of harms following surgery is difficult because of differences in tumour type and location. To make the best use of research and clinical studies of surgery and to ensure patients are offered the best treatments we need to be able to compare the complications or harms associated with them. We can’t do this now because different studies report different complications and measure them in different ways.
This study aims to solve this by agreeing which harms are the most important and should be reported in all research and clinical studies of surgery for children’s brain tumours. One way to do this is to create a ‘core outcome set’ (COS) which is a list of harms that should be reported in all research and clinical studies.
METHODS
We will look at previous research and carry out interviews with patients and carers to create a list of important harms. This list will be used in an online survey completed by three groups of people: patients, parents/carers and health professionals/researchers. The survey will ask how important each harm on the list is to measure and report following surgery. A final smaller meeting will be held discuss the results of the survey and agree the final COS. Patients and carers will be involved in all stages of this project including in the Study Advisory Group guiding the development of this project, interviews, survey and final meeting.
OUTPUT/IMPACT
We will publish the final COS in academic journals and present it at conferences. The COMBAT Project will provide a way to compare research and clinical services and will provide building blocks for future research.
Start dates may differ between countries and research sites. The research team are responsible for keeping the information up-to-date.
The recruitment start and end dates are as follows:
Observational type: Qualitative;
You can take part if:
You may not be able to take part if:
• Patients under the age of 8 for participation in the interviews and Delphi survey • Adult patients over the age of 18 at diagnosis • Spinal tumours. • Non neuro-oncological pathologies. • Isolated surgical adjuncts such as external ventricular drain. • Isolated non surgical interventions such as such as pharmacological therapy, chemotherapy, radiotherapy, radiosurgery, peri operative measures and supportive treatments or therapies. • Unable to consent if over 16yrs old - patients who are unable to consent are unlikely to be able to engage with the interviews or survey appropriately and so will be excluded. • Unable to assent for participation if 15yrs old or under (e.g. cognitive issues) • Non-English speaking participants – this is due to time and financial restrictions which do not allow for translation services.
Below are the locations for where you can take part in the trial. Please note that not all sites may be open.
Sandhya
Trichinopoly Krishna
sandhya.t.krishna@doctors.org.uk
Mr
Conor
Mallucci
conor.mallucci@alderhey.nhs.uk
Sandhya
Trichinopoly Krishna
sandhya.t.krishna@doctors.org.uk
The study is sponsored by ALDER HEY CHILDREN'S NHS FOUNDATION TRUST and funded by ALDER HEY CHILDREN'S NHS FOUNDATION TRUST; BMA CHARITIES TRUST FUND; .
Your feedback is important to us. It will help us improve the quality of the study information on this site. Please answer both questions.
Read full details
for Trial ID: CPMS 58574
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