Who are we?
The Epidemiology & Cancer Statistics Group (ECSG) is based in the Department of Health Sciences at the University of York. ECSG staff come from many different backgrounds, including research and nursing, and together they oversee the day-to-day running of YHHN. This involves inviting people to join the study, collecting and processing data, and writing up the findings from their work, so these can be shared with clinical staff, other researchers, patients, relatives and the public. ECSG organises the YHHN Patient Partnership, which helps design and shape our research questions and ensures patients, relatives and the public have as much opportunity as possible to be involved in our studies.
What do we do?
YHHN collects data and samples from all patients with blood disorders, which are used to investigate why these diseases develop and how people respond to different treatments. More specifically:
- We carry out ethically approved research studies using samples of blood and tissue left over from tests carried out when patients are diagnosed.
- Our research team look at patients’ medical records and record relevant information (such as test results, treatments amd some previous illnessess).
- We link to NHS Digital to obtain information about patients’ medical conditions and the care they receive. This information comes from Hospital Episode Statistics (HES), the Office for National Statistics and Cancer Registries. Further information on what we do with these data (fair processing) are given here.
- We send questionnaires to patients asking them to provide us with information about their lifestyle, other illnesses, symptoms before diagnosis and quality of life.
Further information about the types of data we collect can be found on the Haematological Malignancy Research Network website.
To explore our study information documents and frequently asked questions, click the links below