The 2022 conference of the International Society for Pharmacoepidemiology (ICPE) will be held this week in Copenhagen, Denmark and Broadstreet is pleased to be presenting three posters regarding our work in collaboration with our colleague at PTC Therapeutics on the rare disease, Friedreich Ataxia (FA). The first poster, titled “Outcome measures relevant for assessing health related quality of life and utility in Friedreich Ataxia” will be presented in Poster Session A on Friday August 26th. This study is important because, while several generic preference-based measures of health-related quality of life exist, their coverage of domains, validity, feasibility, and acceptability for assessing the impact of FA on the HRQoL of patients and caregivers has not been examined. This work seeks to address that gap and the findings will be useful for informing the choice of outcome measures for HRQoL studies and clinical trials in FA and in health economic analyses.
Also in Poster Session A on Friday, we will be presenting our poster titled “The development of a conceptual model to describe the health-related quality of life impacts of living with Friedreich Ataxia”. This study provides insight into the relationship between the varied clinical manifestations of FA and other determinants of HRQoL. To date, despite the profound impact the manifestations of FA have on patient health-related quality of life, this relationship has not yet been explored.
Finally, on Sunday August 28, 2022, as part of the Spotlight Session on Rare Diseases our poster titled “The use of United States administrative claims data to study patients with Friedreich Ataxia: The impact of specific and non-specific coding periods” will be presented. This study looks at the challenges with using current diagnostic codes for using real-world evidence studies to characterize the burden of illness in FA.
It’s good to be getting back to in person meetings again and we are looking forward catching up with colleagues and seeing what’s new in the field of pharmacoepidemiology research.