Designing a registry for patients with rare blood cancers

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Consultation has concluded

Researcher at work in a lab with equipment including vials and slides

Help us build a data registry with invaluable information for researchers and the NHS


Background

Cancer registries hold vital data about cancer patients - information collected from individuals from their diagnosis onwards.

Registries are valuable especially in rare diseases because they provide information that can help identify emerging trends as well as capture differences in the management of patients and their outcomes with different treatments.

Registries are also valuable to researchers, who can investigate the data collected to improve how services are targeted in the future. In addition they can help us understand how the disease affects patients’ quality of life.

“As a patient it is really exciting to see this project as it will increase understanding of these diseases, improve patient care, inform current and future treatments and encourage research.”

Kate, LGLL patient.

We want to work with patients and their families to find out what they would like a registry to be able to tell them and us. We will find out what their research interests and priorities are, making sure that we are capturing the right data in the registry to be able to help answer the research questions they give us.

We are in the initial stages of designing a registry (database) of patients with rare mature lymphoid leukaemias (see Box 1)

This registry may eventually be expanded to encompass other lymphomas/ leukaemias.

Thank you

Out thanks to everyone who took the time to contribute to our Ideas Board by adding ideas and liking and commenting on the ideas already posted.

You can read a brief report summarising what you told us and which topics got the most votes.

This research is funded by a patient and public involvement grant from the National Institute for Health Research Biomedical Research Centre at the Royal Marsden and ICR.

Help us build a data registry with invaluable information for researchers and the NHS


Background

Cancer registries hold vital data about cancer patients - information collected from individuals from their diagnosis onwards.

Registries are valuable especially in rare diseases because they provide information that can help identify emerging trends as well as capture differences in the management of patients and their outcomes with different treatments.

Registries are also valuable to researchers, who can investigate the data collected to improve how services are targeted in the future. In addition they can help us understand how the disease affects patients’ quality of life.

“As a patient it is really exciting to see this project as it will increase understanding of these diseases, improve patient care, inform current and future treatments and encourage research.”

Kate, LGLL patient.

We want to work with patients and their families to find out what they would like a registry to be able to tell them and us. We will find out what their research interests and priorities are, making sure that we are capturing the right data in the registry to be able to help answer the research questions they give us.

We are in the initial stages of designing a registry (database) of patients with rare mature lymphoid leukaemias (see Box 1)

This registry may eventually be expanded to encompass other lymphomas/ leukaemias.

Thank you

Out thanks to everyone who took the time to contribute to our Ideas Board by adding ideas and liking and commenting on the ideas already posted.

You can read a brief report summarising what you told us and which topics got the most votes.

This research is funded by a patient and public involvement grant from the National Institute for Health Research Biomedical Research Centre at the Royal Marsden and ICR.