How might stored samples contribute to future research?
Doctors already know about some of the causes of kidney disease and heart disease. Scientists also think that other factors might play a part, but there is limited understanding of how they work.
In particular, we have limited knowledge about the effect of genes/DNA on the risks of kidney disease, heart disease, strokes, diabetes and a range of other health problems that might be linked to these diseases. These include diseases that doctors might refer to as metabolic, cardiovascular, infectious or malignant diseases.
If we have participants' permission to keep their samples, then in the years to come they might be able to make new scientific discoveries using both the information collected in the study and by defrosting and analysing samples (including testing some or all of participants' genes/DNA).
With participant consent, the blood/urine samples will be stored in a freezer overseen by the University of Oxford for up to 30-years after the study is completed, and will then be destroyed.
All blood and urine samples will be stored with a unique number, which means participants cannot be directly identified from them (i.e. they are “de-identified” from names and other written personal details).
Please note that much like fingerprints, it is theoretically possible to identify someone if their samples are genetically analyzed or if their samples are put together with other data about that person. But the chances of successful re-identification by someone without permission to do so are very low because we implement adequate organizational and security measures to protect participant data.
For this future research to happen we may need to share “de-identified” samples with laboratories outside Oxford which can perform specialized tests. Samples may also be sent to Boehringer Ingelheim1 to process, together with information collected in the study, for the research purposes described above.
Results from this research may also be shared with health regulators.
Please note that neither participants nor their doctors will be given any information from the analysis of blood and urine samples, including any details of genes/DNA. In particular, having these samples stored and tested will not affect the ability to get medical or life insurance.
1When we say Boehringer Ingelheim, in this case we mean it to also include Boehringer Ingelheim Group of Companies, who may work with other public or commercial private partnerships.