Introduction People with a long term condition require information in order to self manage and make informed choices. Access to timely information can be challenging for people with rare conditions.CarolHertsScholesHertsBMJBmj Supportive & Palliative Care...
Background: Health information-seeking is a coping strategy used globally by individuals with a personal or family history of a medical condition, including Huntington's disease (HD). Objective: We sought to ascertain information-seeking practices of young people who grew up at-risk for HD. Metho...
Remote memory for visuospatial information was studied in patients with Huntington's disease (HD) using a recently developed test of geographical knowledge. When asked to locate places on a map of the region of the U.S. in which they were born and raised or on a map of California where th...
(nerve fibers, varicosities, and nerve endings). In the brain, the regions where it can be mainly found are the cerebellar cortex, the neocortex, the striatum, and the hippocampal formation. Defects are the cause of Huntington s disease, a neurodegenerative disorder characterized by loss of ...
Method A postal questionnaire was sent to 150 people living with HD, MND and PSP in Hertfordshire regarding knowledge of their disease before diagnosis, information given at diagnosis including supporting services, and ability to make informed choices. Results 62 (41%)–6 HD, 39 MND, 17 PSP- ...
This article explores the potential use of extracellular vesicles (EVs) as biomarkers for Huntington disease (HD). The researchers conducted a study using advanced bioinformatics and machine learning to analyze EVs from individuals with HD and healthy individuals. They discovered that EVs from HD...
In Huntington's disease (HD), accurate estimates of expected future motor impairments are key for clinical trials. Individual prognosis is only partially explained by genetics. However, studies so far have focused on predicting the time to clinical diagnosis based on fixed impairment levels, as ...
doi:10.1093/braincomms/fcae462Van den Stock JanCypers GertDe Winter Franois-LaurentVandenbulcke MathieuBrain Communications
Parents were concerned that the child might worry about the affected parent's health causing a negative impact on the parent-child relationship. They were also concerned about the child's reaction to learning about their own risk to develop HD and the chance that they might perceive themselves ...
We sought to assess understanding of GINA among individuals affected by the autosomal dominant condition, Huntington disease (HD). We conducted a cross-sectional survey of individuals with varying risk of HD to assess their familiarity with GINA. As a control, individuals were surveyed about their ...