World-class blood cancer registry is the focus of patient involvement event

On May 18th, the Epidemiology & Cancer Statistics Group along with their major funder, the Leukaemia & Lymphoma Research charity, hosted an open day for patients with blood disorders plus their families, friends and carers. The reception, which aimed to raise awareness about the research taking place in the area, was held at the Ron Cooke Hub and attracted more than 170 visitors. The main focus of the event was a celebration of the Yorkshire and Humberside Haematology Network, or Haematological Malignancy Research Network as it is better known to the research community. Dr Russell Patmore, Medical Director for Cancer Clinical Support in Hull and East Yorkshire, gave a talk on the history of the network, its aims, and the importance of the results in terms of ensuring that patients receive the best and most appropriate treatment for them as individuals. Professor Chris Bunce, LLR Research Director, and Dr Pete Hillmen, Consultant Haematologist at Leeds Teaching Hospitals Trust, also gave presentations on LLR’s future research strategy and the Trials Acceleration Programme respectively.

HMRN (www.hmrm.org) was established in September 2004 to address the research needs and information requirements of clinicians, researchers and patients. It is a collaborative venture, combining ECSG’s epidemiological expertise with that of a single integrated haematopathology laboratory (the Haematological Malignancy Diagnostic Service) and a unified clinical network including all 14 hospitals in the area. With a catchment population approaching 4 million, and over 20,000 registered patients (accruing at a rate of around 2,200 a year), HMRN is a unique and highly successful venture. High quality primary source data (diagnostic, prognostic, treatment, and outcome) are being collected and linked from a wide variety of sources. The maturing longitudinal information emerging from which is a resource which is invaluable in addressing research questions that are of real importance.

Fundamental to the success of the project is the YHHN Patient Partnership, which was established in 2009. Currently comprising more than 800 people, the partnership is a large, collaborative resource in which patients and carers have the opportunity to shape or take part in our research. The partnership has significant impact on HMRN activities and has been cited by the National Information Governance Board for Health and Social Care (NIGB) as an example of good practice within research.

Members of ECSG, as well as clinical colleagues from across the Network and representatives of the Patient Partnership and York Haematology Support Group were available on the day to answer patients’ questions, provide advice and listen to people’s views about possible future research directions. All presentations have been made publicly available through the LLR website.