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Webinar | Measuring Quality of Life

30th September, 2021 at 3:30 pm - 5:00 pm

Findacure is teaming up with Healx to deliver an informative webinar, exploring how the importance of Quality of Life measures is expanding, and the ways patient groups can contribute to the development of disease specific measures.

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 wellbeing 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 will explore the ways to measure quality of life in rare diseases for the purpose of health technology assessment, and the ways that patient organisations can get involved in the process.


30th September, 2021
3:30 pm - 5:00 pm
Event Category:


Philippa Norman


Online at Zoom