Department of Medicine, Project lead: Dr Anna Andreasson
The dataset under consideration covers patients with Lynch Syndrome. There are approximately 500 individuals with this condition in Sweden. The Karolinska dataset currently contains data on about half of these. Every month, approximately 20 individuals are added from previously diagnosed cases and a further five new cases are added.
Data will be captured using ‘Care Partner’. This is a centrally hosted data capture application, also supplied by Imosphere. Clinicians involved in the treatment of Lynch Syndrome patients will enter data directly into the system.
The data includes:
- background medical history and diagnostic data;
- test data; and
- quality of life data.
The data will automatically find its way into the Atmohealth platform. This enables clinicians and researchers to track patient characteristics, progress, quality of life and other outcomes without any formal technical involvement.
The main research objective is to identify quality control parameters related to patient interventions associated with Lynch Syndrome. The area of interest is the quality of cancer screening activities undertaken with Lynch Syndrome patients. Individuals identified with this syndrome have an 80% chance of developing colon cancer in their lifetime, so colonoscopies are undertaken as part of the screening.
It is hoped that use of Atmohealth will help to:
- identify health care quality controls for patients with Lynch Syndrome;
- visualise the data in a more useful format; and
- easily extract and submit data for international registries.
Data will also be exportable for more formal statistical analysis.