Information for participants

Little is known about why people develop blood disorders and how they respond to different treatments.  The Yorkshire and Humberside Haematology Network (YHHN) was set up in 2004 by the doctors and nurses who provide care for patients with blood disorders across the 14 hospitals in the study region (see map below), and researchers at the University of York.  By collecting as much information as we can from people who develop these diseases, we hope to find out more about why blood disorders occur and how treatment affects people.  This information may also help to improve the organisation of healthcare in the region.

Almost 4 million people live in the YHHN study area; and around 2000 of these are diagnosed with a blood disorder every year.  If you are currently being cared for at a hospital that is part of YHHN, you may receive a study pack from us.  It would be a great help if you could complete the form in the pack and return it to the study team at York in the Freepost envelope provided.

The Epidemiology & Cancer Statistics Group (ECSG) is based in the Department of Health Sciences at the University of York.  ECSG researchers have been studying blood disorders and the way they affect people since 2004.  Staff come from very different backgrounds and as well as researchers, the team includes study nurses, data analysts, programmers, educational technologists and administrators.  The ECSG team oversee the day-to-day running of YHHN.  They invite people to join the study, collect and process data and write up the findings from their work, so they can be shared with clinical staff and other researchers.  ECSG organises the YHHN Patient Partnership, a group that makes sure patients, their relatives and the public are kept up to date with the study results.

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 team of research nurses look at patients’ medical records in hospitals and GP surgeries and record relevant information (such as previous illnesses and treatments).
   
• We link to NHS Digital to obtain information about patients’ medical conditions and the care they receive.  To do this we send each patient’s surname, forename, gender, date of birth and NHS number, along with their YHHN study number to NHS Digital, who then link to various datasets to provide us with information about each patient’s illnesses, hospital care, cancers that are unrelated to the blood disorder, and death registration (where applicable).  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 background information about issues such as their lifestyle factors, other illnesses, symptoms before diagnosis and quality of life.

To explore our study information documents and frequently asked questions, click the links below