What is happening to my data?
Currently...
At present the national chronic subdural data hub has not been launched. We are going through the necessary approval processes relating to data security and research ethics before, hopefully, launching later in 2026. We are following all necessary steps required by the Health Research Authority to conduct the work
What about when the project starts?
Once the project is running we will be hoping to collect data from all Neurosurgical hospitals in England and Wales. We will post details about which sites are currently participating elsewhere on this website when that happens. We will also be advertising the project across participating sites.
What this means is that if you (or a family member) were diagnosed with a chronic subdural haematoma during the data collection window (target start late summer 2026) then it is possible that your data is being submitted to the registry. All data will be stored securely using computers that meet international and NHS standards for data security.
Identifiable data about you will only be visible to the teams that have looked after you, we will hold it only to allow records to be linked together and will delete it as soon as possible.
We are proposing to process this information without routine consent using a legal waiver issued by the Confidentiality Advisory Group but we would much rather do so with your consent. Participating hospitals will be encouraged to advertise the study to allow patients to opt-in or out. You will be able to register to opt-out via this website when the study launches.
We will advertise study launch and participating sites via this website
Why do you need this data?
We want to use this data to:
- Understand how care is delivered and share it with the national organisations that oversee this care, we hope this will allow us to make services better in the future
- Understand if there is in care access or outcome
- Understand if we can get better predict patients at greatest risk of complications. This will help us counsel patients and their families better around the time of surgery.