Data

Our Data Linkage Work Explained

A national cohort of individuals with sickle cell disease and beta-thalassaemia born between 1996 and 2025 has been established using data provided by the NHS England National Disease Registration Service (NDRS) and including linked information from Hospital Episode Statistics (HES) and Office for National Statistics (ONS) datasets. Analyses examining mortality patterns and causes of death have now been completed and a manuscript is being prepared for publication.

Using the same cohort of individuals with sickle cell disease and beta-thalassaemia, work has been undertaken to quantify the cost of healthcare and support services used by people living with these conditions. Currently a manuscript is being prepared for publication.

In parallel, ongoing research using the Education and Child Health Insights from Linked Data (ECHILD) datasets is investigating educational experiences and outcomes among children and young people born between September 1997 to August 2008. This work is examining educational attainment, special educational needs provision and school attendance to better understand the how sickle cell disease and beta-thalassaemia may affect children’s education.

Together the work using national data sources is generating evidence to inform healthcare, education and ultimately improve outcomes for affected individuals and their families.

Why do we need to collect data?

Young people diagnosed with the most common childhood blood cancers, acute lymphoblastic leukaemia and acute myeloid leukaemia, are now more likely to survive than ever before. We know that many long-term cancer survivors remain at greater risk of physical health problems later on due their treatments. However, information on how they fare in terms of their mental health, education, employment and other social outcomes is largely unknown.

Despite sickle cell disorders and beta-thalassaemia being the most common inherited blood conditions, much less is known about their effect on health, education and social function.

More research is needed to understand these issues so we can improve care.

What data will we collect?

For the data linkage we will use personally identifiable data to enable HALO team researchers approved to work with such data to link different types of information together to enable us to answer the study questions.

We will use the following identifiable data to ensure we carry out the linkage accurately:

  • Name,
  • NHS number,
  • Hospital ID number,
  • Date of birth,
  • Postcode,
  • Sex.

The following databases will be accessed for data linkage part of HALO study:

Health databases included:

  • National Haemoglobinopathy Registry (NHR),
  • National Congenital Anomaly and Rare Disease Registration Service (NCARDRS),
  • British Society of Blood and Bone Marrow Transplantation and Cellular Therapy (BSBMTCT) – sickle cell and beta thalassemia patients only,
  • NHS England healthcare datasets
  • Primary Care data.
  • The Yorkshire Specialist Register of Cancer in Children and Young People (YSRCCYP) for leukaemia patients only. 

Non-health databases included:

  • National Pupil Database (NPD) for educational attainment,
  • His Majesty’s Revenue and Customs (HMRC) and the Department for Work and Pensions (DWP) for Universal Credit information rather than tax returns. 

Once the data are linked, all information that could identify a person will be removed and replaced with a code number so that no identifiable information will be made available to the HALO researchers.

We will only collect the patient data that will be necessary to answer the research questions. You can contact the HALO study team to find out more about what precise information will be collected. If you are eligible to be part of the study, you do not need to do anything to be included.

Survey

People will have an option 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.

Participants to the leukaemia cohort, who consented for their data to be linked will have their details and responses stored on the Yorkshire Specialist Register of Cancer in Children and Young People (YSRCCYP). To find out more about YSRCCYP and its Opt-out policy, please visit YSRCCYP and YSRCCYP Opt-out. Participants will also have an option to keep their survey data with the YSRCCYP in perpetuity.

If you are approached to take part in the survey, some of the team will need to know your name and contact details so they can send you the survey questions. We will make sure that as few people as possible can see this sort of information. When producing any reports or publications, we will use a code number to replace your identifiable data to ensure any information about you is not revealed.

Patient confidentiality and approvals

The HALO study team will be careful with the information we receive and has a special approval from the Health Research Authority (HRA), following advice from the Confidentiality Advisory Group (CAG), for this research to take place.

We have support from the Health Research Authority (HRA/REC: 24/YH/0186) and Secretary of State, following advice from the CAG (CAG: 24/CAG/0138). The HRA makes sure research is done safely and ethically in people’s best interests.

How will the HALO data be stored?

Once the study has finished, the HALO research team will keep the research data for 10 years, in case we need to check it. Pseudonymised data used in the study will be held securely at the University of Leeds and will then be disposed of securely.

How will the HALO data be used?

We never publish anything that could identify anyone individually, nor enable anyone to be identified. The HALO study team makes sure your details are safe and used properly.

Outcomes from the study will be shared with patient communities, healthcare professionals and organisations involved with the care and support of people living with these conditions. The HALO team will publish the study outcomes in academic journals, at relevant professional and patient conferences and through associated charities.

Leukaemia participants can opt to have their survey responses and linked data stored on the Yorkshire Specialist Register of Cancer in Children and Young People (YSRCCYP). To find out more about the YSRCCYP and view the ‘opt out policy, please visit YSRCCYP and YSRCCYP Opt-out.

If you would like to know more about how the data is used and linked, please contact HALO study team