HD-work: Working capacity and burn out in Huntington's Disease
Recruiting
By following participants for two years we want to map out what changes are taking place in employed gene carriers of HD. The research does not solely focus on whether a participant is employed or not, but wants to highlight which changes lead up to unemployment. Therefore we will collect a lot of demographical information on working status and work problems participants encounter, consisting of but not limited to the prevalence of burn-out in HD compared to the general population. We want to relate this information to cognitive, psychiatric and motor symptoms of HD.
This study aims to provide more insight into the work-related problems that patients encounter at an early stage of HD and will thereby contribute to finding leads for further research and (better) support at the psychosocial level.
Subtype: Observational Natural
Primary Purpose: Basic Science
Ages Eligible
for Study:
Sexes Eligible
for Study:
All
Accepts Healthy Volunteers:
no
Have a confirmed CAG-expansion of *36 in the HTT gene.
– Be employed, or have been employed 2 years prior to assessment, in any capacity (e.g. full time (paid job for 36 hours or more), part-time (paid job for less than 36 hours) or volunteer (unpaid job)).
– Be at least 18 years of age.
– Be at most 64 years of age, due to the longitudinal set up of the research and the age of retirement in the Netherlands.
Major general or neurological comorbidity that is unrelated to HD.
– Any other condition that in the opinion of the investigator warrants exclusion of the study.
– Inability to understand the information about the study.
LOCATION
NETHERLANDS
TRIAL SITE: Leids Universitair Medisch Centrum
Albinusdreef 2, Leiden 2333ZA, NL
