Measuring Quality of Life
When developing drugs for a rare condition, groups need to consider which evidence will be required by health technology assessment bodies to ensure a smooth pathway for patient access.
While demonstrating that a treatment has a significant impact on outcome measures assessed by clinicians is key for the success of clinical trials, it has become increasingly important to demonstrate a real impact on the lives and well being of the patients themselves to ensure positive reimbursement decisions and access.
Capturing such data is more easily said than done. A number of standard tools exist which try to measure and quantify an individual’s quality of life. These can go some way to capturing the impact of a new treatment, but most measure a small number of variables, and fail to capture the subtleties that matter to a given rare disease patient population.
Subsequently, many groups are now trying to devise more disease specific quality of life measures – tools designed to more accurately measure change in the outcomes that matter to their specific rare disease.
The development and validation of these tools is a significant challenge, but when done right they can offer exceptional insight into the disease state and wellbeing of rare disease patients.
This webinar was produced in collaboration with Healx.
With thanks to:
Resource type
Webinar
Duration
1.5 hours
Last updated
September 2021
Resource type
Webinar
Duration
1.5 hours
Date
September 2021
What will you learn in this webinar?
- The ways to measure quality of life in rare diseases for the purpose of health technology assessment
- How patient organisations can get involved in the process of measuring quality of life in rare diseases.
Who is this webinar for?
This webinar is for patient groups who want to learn how to measure quality of life in rare diseases for the purpose of health technology assessment.
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