Health related quality of life and resource needs of survivors of leukaemia and life-threatening haematological disorders in young people
HALO is a research study looking at the survival rates of people diagnosed with Sickle Cell Disorder or Beta Thalassemia, acute Lymphoblastic or acute Myeloid Leukaemia in childhood and the long-term effects of that diagnosis and treatment.
It aims to:
- To identify how these conditions and their treatment might impact on individuals’ long-term health and quality of life.
- To identify unmet needs and health inequalities.
- To use this information to direct where improvements in care and support are needed.
Populations included in the study.
Anyone diagnosed with
- Acute leukaemias (lymphoblastic or myeloid) or,
- A sickle cell disorder or,
- Beta thalassaemia currently or previously requiring red cell transfusion.
How will this be done?
There are 2 parts to the HALO study: data linkage and survey.
Data linkage
In the data linkage part of the study, we will access routinely collected information on the above groups of people using NHS England sources, national registries, educational and social care data sources. These will be used to conduct data linkage and provide important information on patients’ journeys across multiple aspects of life.
Survey
HALO will invite people who are at least 18 years old and are registered with or under the care of specialist haematology teams in the North of England or cancer services at Leeds Teaching Hospitals NHS Trust and Sheffield Teaching Hospital NHS Foundation Trust to take part in a survey about their condition and treatment. Participants will have the option to have their survey responses linked with existing NHS data to further improve understanding of what it is like living with these conditions.
For more information visit the HALO website: www.halohaemstudy.org.uk or scan
the QR code below.
Patient and Public Involvement and Engagement (PPIE)
Members of the public including patients have been consulted throughout the application process during the set up the HALO study and we have a group of experienced clinicians, academics and people from relevant national charities who are members of our Study Steering Committee.
They meet on a regular basis and help to ensure that the study is designed and conducted to high standards.
We have also developed a HALO PPIE group, which involves people with lived experience of the conditions included in the study, and who contribute to the design, review and management of the HALO study. This is to ensure we are asking the most appropriate questions, in the correct way of the right people.
If you would like to be involved or be a member of the HALO PPIE group, please get in contact using the email: halo_study@leeds.ac.uk or scan the QR code below.
Team
Principal Investigator
Professor of Paediatric Epidemiology
University of Leeds
Co- Investigators
Leeds Teaching Hospitals NHS Trust
- Dr Beki James – Consultant Paediatric Haematologist
- Dr Mike Richards – Consultant Paediatric Haematologist
- Dr Jacob Grinfeld – Consultant Paediatric Haematologist
Sheffield Teaching Hospitals NHS Foundation Trust
- Dr Khalid Ahmed – Clinical Fellow at Sheffield-Haematology
University of Leeds
- Dr Kate Absolom – University Academic Fellow
-
Dr Ruben Mujica-Mota – Associate Professor of Health
Economics - Thuvia Flannery – Project manager
- Ivana Holloway – Senior Research Statistician
Contact us
HALO_study@leeds.ac.uk