An exploration of primary and secondary care datasets for tReAtment Duration and survIval outcomes of liposarcoma patients in the UK using electronic medical recordS (RADIUS)

Study type
Protocol
Date of Approval
Study reference ID
21_000628
Lay Summary

Liposarcoma is a rare form of cancer that affects fat tissues around the human body. It is primarily diagnosed in adults over the age of 30. Recently, there has been limited research on the diagnosis and treatment of this cancer in the real world, with the most recent major publication dating back to 2009. To better understand the development and treatment of this cancer, this study will select a group of patients who were diagnosed with a liposarcoma between 1998 and 2018 and describe the available information about the cancer, the treatment given to patients and how long the patients survived after diagnosis. Anonymised information from primary care, secondary care and cancer registry databases will be used to gain a full picture of the patients’ characteristics and their care.

This study will allow a better understanding of this group and will enable researchers to see how well detailed treatment and clinical information is recorded. This can also inform future studies looking to improve the management of liposarcoma.

Technical Summary

The overarching aim of this project is to describe patients with liposarcoma, the characteristics of the tumours at the point of diagnosis, the treatment patients received, and their survival. In doing so, we aim to present a detailed picture of the treatment and survival of patients who develop this rare form of cancer in the UK. The project will also facilitate an assessment of the quality of data available from electronic health records in the context of liposarcoma research, thus informing study design for future liposarcoma research using these data to the benefit of patients.

This will be a cohort study of patients with an incident record of liposarcoma between 1998-2018 in their primary or secondary care data record.

The CPRD Aurum primary care data will be used and linked where possible to the Hospital Episode Statistics Admitted Patient Care data (HES APC), Office for National Statistics (ONS) Death Registration data, National Cancer Registration and Analysis Service (NCRAS) Cancer Registry, Systemic-Anti Cancer Treatment (SACT) and Radiotherapy Data Set (RTDS). Practice and patient-level Index of Multiple Deprivation (IMD) data will also be linked where possible.

Results will be descriptive and present patient demographics, tumour characteristics, treatment types received and duration of treatment where feasible. Survival will be modelled using Kaplan-Meier curves.

Health Outcomes to be Measured

Patient demographics (age, gender, IMD quintile, region of GP practice); tumour details (grade, stage, site, morphology, behaviour, histology); treatment received (chemotherapy, radiotherapy, surgery, chemotherapy regimen); duration of treatment, treatment-specific mortality rates and all-cause mortality

Collaborators

Eleanor Yelland - Chief Investigator - CPRD
Jessie Oyinlola - Corresponding Applicant - CPRD
Amy Walker - Collaborator - Boehringer Ingelheim Limited
Helen Booth - Collaborator - CPRD
Nikhil Tanna - Collaborator - Boehringer Ingelheim Limited
Robin Jones - Collaborator - Royal Marsden Hospital
Smit Patel - Collaborator - Boehringer-Ingelheim International GmbH

Linkages

HES Admitted Patient Care;NCRAS Cancer Registration Data;NCRAS National Radiotherapy Dataset (RTDS) data;NCRAS Systemic Anti-Cancer Treatment (SACT) data;ONS Death Registration Data;Patient Level Index of Multiple Deprivation;Practice Level Index of Multiple Deprivation