Health related quality of life and resource needs of survivors of leukaemia and life-threatening haematological disorders in young people
COMING AUTUMN 2024
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:
- Identify how these conditions and their treatment might impact on individuals long-term health and quality of life.
- Identify unmet needs and health inequalities.
- Use this information to direct where improvements in care and support are needed.
- Highlight how these can improve outcomes.
HALO will invite people to take part in a survey about their condition and treatment. It will focus on the those who received a diagnosis on or after 1st January 1990, 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 and Sheffield NHS Trusts.
People can opt to have their survey responses linked to their existing NHS data. Using data linkage techniques we will be able to further improve understanding of what it is like living with these conditions across multiple aspects of everyday life.
Team
Principal Investigator
Professor of Paediatric Epidemiology
University of Leeds
Co- Investigators
Dr Beki James – Consultant Paediatric Haematologist, Leeds Teaching Hospitals NHS Trust
Dr Mike Richards – Consultant Paediatric Haematologist, Leeds Teaching Hospitals NHS Trust
Dr Jacob Grinfeld – Consultant Paediatric Haematologist, Leeds Teaching Hospitals NHS Trust
Dr Kate Absolom – University Academic Fellow, University of Leeds
Dr Ruben Mujica-Mota – Associate Professor of Health
Economics, University of Leeds
Dr Khalid Ahmed – Clinical Fellow at Sheffield-Haematology, Sheffield Teaching Hospitals NHS Foundation Trust
Thuvia Flannery – Project manager, University of Leeds
Ivana Holloway – Senior Research Statistician, University of Leeds
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 includes 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
Contact us
HALO_study@leeds.ac.uk
@HALO_HaemStudy
halo_haemstudy