Introduction to the research study
This research project has been set up to try to find a new way to identify people at risk of liver disease. We know that many people have minor changes in their liver blood tests but it is not possible to know who needs treatment and who doesn’t. It is possible that using blood tests spread out over time, combined with a test for genes that go with a higher risk of liver disease we can find the right patients earlier.
What does this mean for you?
Information from past blood tests will be reviewed to see if the clinical researchers can identify who is at high risk and who is at low risk of liver problems. The hospital research team will then contact some people in either group to invite them to join the research project. In order to do that, the researchers will need to use your registered address to write to you.
If you receive an invitation to join the research project, you are under no obligation to join it. The research does not involve taking any new medicines or treatments. If you choose to take part, you will be asked to undergo a painless ultrasound scan on your belly, and to provide a saliva sample to test for genes associated with liver problems.
Are there any potential benefits for you?
The project aims to improve overall liver care. It is possible that you could be found to have a liver problem when the blood tests are reviewed, or information is obtained later from the scan or saliva test. If that happens, you will be given a letter to inform your GP. Finding liver disease early could potentially prevent future liver health problems.
Are there any risks for you?
It is possible that you will be found to have undiagnosed liver disease. Whilst this can be worrying it is almost always better to find problems early so they can be better treated.
You have the right to opt out.
You can stop your blood tests from being included in the review, and opt out of the research. If you have already signed a ‘National Data Opt Out’ the team will not have access to your blood tests for this research. If you want to opt out of this project and you haven’t signed a National Data Opt Out you can do so easily by contacting the team via the website (www.predictivehealthintelligence.co.uk), or directly (see below). You can also opt back in using the same contact details.
Who is running this research?
Each hospital has a lead researcher. Their contact details are below – please note that unless you receive a direct invitation you will not be able to take part in this study.
This research study involves several companies including Sano Genetics, which sponsors the study and does genetic testing on saliva, Predictive Health Intelligence, which has developed software to help find people who might be at-risk for liver disease using existing blood tests, and Tawazun Health, which does liver ultrasound tests.
NO INFORMATION WILL BE SHARED WITH COMPANIES OUTSIDE THE NHS UNLESS YOU HAVE CONSENTED TO THIS AS PART OF JOINING THE RESEARCH PROJECT.
What do you need to do?
You can find out more information, or opt out by visiting
https://predictivehealthintelligence.co.uk/
More information about the other companies involved can be found by following these links:
In addition to the research, the Predictive Health Intelligence team is working with Somerset NHS Foundation Trust to pilot new ways of identifying other patients with liver disease. Currently this is active in Somerset but will be expanding to other areas soon. More details are available on their website (www.predictivehealthintelligence.co.uk),
The investigators on this project are:
Dr Patrick Short Sano Genetics, Salisbury House, Station Rd, Cambridge CB1 2LA | Chief Investigator |
Dr Tim Jobson Consultant Gastroenterologist Musgrove Park Hospital Taunton. TA1 5DA | Principle Investigator |
Professor Aftab Ala Royal Surrey County Hospital Egerton Rd, Guildford GU2 7XX
| Principle Investigator |
For information on opting your data out from this project please contact:
Principle Investigator
Dr Tim Jobson
Consultant Gastroenterologist
Musgrove Park Hospital
Taunton. TA1 5DA
01823 342720
This work was supported by Innovate UK
Grant Number iUK 10073169
Predictive Health Intelligence is a medical technology company who have developed a case-finding search engine to help clinicians identify people who might be at risk of developing liver disease. Identifying patients early, whilst more treatment options are available, can improve clinical outcomes and reduce the burden of late-stage liver disease on healthcare systems.
Predictive Health Intelligence is the result of a pioneering partnership between expert clinicians, specialists in healthcare information management, and NHS know-how. It was originally funded by the National Institute for Health and Care Research.
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