Background Enroll-HD is a worldwide multi-centre study aimed to better understand Huntington’s disease (HD) in a global cohort. The involvement of young-adults is very important. However, the participation of people younger than 30 years of age seems limited.
Aims To provide a description of the clinical and socio-demographic characteristics of young adults involved in Enroll-HD.
To better explain the low involvement of this group on research and to define potential strategies of improvement.
Methods Analysis of the Enroll-HD dataset (second release) focusing on individuals below 30 years-old. Data represents the overall sample and also is divided into group categories of pre-manifest, at-risk, symptomatic and gene-negative.
Results With a mean age of 25 ± 3 (18–29) and mean education equivalent to ISCED 3, young-adult individuals represent the 8% of the Enroll-HD sample with a significant increased number of women (70% premanifest, 80% gene-negative and 65% at-risk). Compared to adults, young-adults have a family history of younger disease-onset in parents (mean age = 39 ± 9). Whereas past history of depression, irritability and obsessions was present in up to 45%, just an 8% showed signs of relevant behavioural problems at enrollment. Full-time job and unemployment was equally distributed along the sample. Mental and physical health perception (SF-12) scored around the mean value of 50.
Conclusions Young-adult participation in Enroll-HD is substantially low and unequally distributed between categories and gender. Earlier exposure to parents diagnosis, good health perception and resolution of common behavioural aspects seems to characterise active young-adult participants.