Wright, J LRickards, HMcDonald, PDe Souza, J
Background Huntington's disease (HD) is a severe autosomal dominant disorder. People at-risk can ensure healthy biological offspring via Prenatal testing (PNT), or Preimplantation genetic diagnosis (PGD). Worldwide, there is a consistent gap between theory and application. In Israel, both options...
Oral health care for people with Huntington’s disease should be based on the principles of achieving a disease-free, pain-free, and safe mouth, with the standard care and treatment that is no less than that which is provided for an individual that does not have this condition. Such care ...
Background People with Huntington's disease (HD) often struggle to sustain regular physical activity despite evidence that exercise is beneficial. Caregivers collaborate with people with HD to support their physical activity but have indicated that they would benefit from training and support.Aim We ...
Background How young people find out about a family history of Huntington's disease (HD) is important because disclosure experiences influence young people's coping mechanisms, family relationships and future decision making. While a growing body of research has explored family communication about genet...
A stand-alone genetic counseling narrative group has been offered by one regional genetics clinic in the north of England to support people's coping following predictive genetic testing for HD. Groups are held 4-5 times per year with patients attending a group on a single occasion. This study...
In England, around one in four people are living with obesity, but it is highly stigmatized. Negative obesity-related stereotypes and weight-related discrimination are widespread in society. Experience of weight stigma is a major public health issue: people affected by weight stigma are more likely...
AttitudesResearchCarersHuntington's diseaseParticipantsUnderstandingThepurposeofthispaperistoexploretheattitudeandunderstandingofresearchamongpeoplewithHuntington'sdisease(HD)andtheircarers,aswellastheirexperiencesofresearchparticipation.Design/methodology/approachSemi-structuredinterviewswereconductedwith12participantswithHD(...
Huntington's disease (HD) is a progressive neurodegenerative disease caused by a CAG trinucleotide expansion in the huntingtin gene. The length of the CAG repeat is inversely correlated with disease onset. HD is characterized by hyperkinetic movement disorder, psychiatric symptoms, and cognitive ...
With the emphasis upon increasing participation, there is a danger that the relatively small numbers of patients with Huntington9s disease (HD), a neurodegenerative disease, are repeatedly requested to take part in research.AimThe aim of this study was to investigate the attitudes and perceptions ...