Sarah Ratsch

Humanistic Burden of Huntington Disease

Idaira Rodríguez Santana, Samuel Frank, Maria Doherty, Rosa Willock et autres

Background and Objectives Huntington disease (HD) is a rare, inherited, and highly complex neurodegenerative disorder with no currently approved disease-modifying treatments. We investigated the effect of HD on health-related quality of life and other patient-reported outcomes in the Huntington9s Disease Burden of …

us, gb, nl (code pays fourni par la source)

H49 The Huntington’s disease quality of life battery for carers (HDQOL-CS): evidence from the Huntington’s disease burden of illness (HDBOI) study for Europe

Idaira Rodríguez Santana, Rosa Willock, Samuel Frank, Tiago Mestre et autres

Background Huntington’s Disease (HD) progresses over time, impacting mental health, work productivity and inter-personal relationships of the person with HD (PwHD) and their caregivers. We explore the impact of HD on caregiver’s quality of life (QoL) using the Huntington’s Disease Quality of …

us, ca, gb (code pays fourni par la source)

H48 Caregiver burden: evidence from the Huntington’s disease burden of illness (HDBOI) study for Europe

Idaira Rodríguez Santana, Rosa Willock, Samuel Frank, Barbara D’Alessio et autres

Background Huntington’s Disease (HD) is a progressive neurodegenerative disorder which universally requires caregiver support over the patient’s lifetime. Caregivers of people with Huntington’s Disease (PwHD) experience a large burden which increases with disease progression. This research provides a detailed profile of informal …

us, gb (code pays fourni par la source)

F64 Suicidal ideation and sleep disturbances by disease stage: evidence from the Huntington’s disease burden of illness (HDBOI) study for europe (EU5)

Idaira Rodríguez Santana, Rosa Willock, Samuel Frank, Tiago Mestre et autres

Background Sleep disturbances and an increased risk of suicide are common in people with Huntington’s disease (PwHD), with rates significantly higher than those of the general population as well as other neurodegenerative diseases. However, the magnitude of these problems is still poorly …

us, ca, no, gb (code pays fourni par la source)

POSB349 Work Productivity and Activity Impairment of Huntington's Disease Patients By Disease Stage in the US and EU5: Evidence from the Huntington's Disease Burden of Illness Study (HDBOI)

Isabel Santana, Samuel Frank, Jamie Hamilton, Hayley Hubberstey et autres

gb, us (code pays fourni par la source)

POSB348 Differences in the Health-Related Quality of Life of Huntington's Disease Patients By Disease Stage in the US and EU5 from the Huntington's Disease Burden of Illness Study (HDBOI)

Isabel Santana, Samuel Frank, Alexandra Fisher, Rebecca Fuller et autres

gb, us (code pays fourni par la source)

POSA140 Work Productivity and Activity Impairment of Caregivers of Huntington's Disease Patients in the US and EU5: Evidence from the Huntington's Disease Burden of Illness Study (HDBOI)

Robina Josiah Willock, Samuel Frank, C Stanley, Astri Arnesen et autres

gb, us (code pays fourni par la source)

F07 Demographic characteristics and health resource use of the european participants from the huntington’s disease burden of illness study (HDBOI)

Rosa Willock, Samuel Frank, Tiago Mestre, Astri Arnesen et autres

Background Huntington’s Disease (HD) is a rare, inherited, and complex neuro-degenerative disorder, affecting cognition, movement, and mood. There is a lack of up-to-date real-world evidence documenting the overall burden of HD by disease stage and from a multinational perspective. This study provides …

us, ca, gb (code pays fourni par la source)

F08 Huntington’s disease burden of illness (HDBOI): study methodology, sample representativeness and fieldwork risk mitigation strategy during the COVID-19 pandemic

Idaira Rodríguez, Samuel Frank, Alex Fisher, Rebecca Fuller et autres

Background The prevalence of Huntington’s Disease (HD) has increased over time, augmenting the associated economic and humanistic burden. The HDBOI study aims to provide an up-to-date assessment of the burden of HD from a multinational perspective. Methods The HDBOI is a retrospective, …

us, gb (code pays fourni par la source)