To gain insight (1) into psychological functioning of couples where one partner is carrier of HD and who have PGD child(ren); and (2) into the family interactions in these families.
ID
Source
Brief title
Condition
- Neurological disorders congenital
Synonym
Research involving
Sponsors and support
Intervention
Outcome measures
Primary outcome
Current psychological functioning of parents and their family
Secondary outcome
n.a.
Background summary
Huntington's disease (HD) is an autosomal dominant neurodegenerative adult
onset disorder. HD has a significant impact on the whole family. Couples where
one partner is a carrier of HD and who want are seeking to have children have
several reproductive options to avoid passing on the HD gene to offspring,
including preimplantation genetic diagnosis (PGD). PGD can provide direct
testing of embryos obtained after in vitro fertilisation (IVF), and
subsequently, if available, an unaffected embryo is selectively transferred
into the uterus. On the one hand, there is broad societal and political support
for PGD if one of the parents is a carrier of HD. On the other hand, there are
moral and psychological questions with regard to current PGD-practice. These
include concerns about the quality of life of PGD-children who grow up in
families with serious genetic disorders. There is little data on psychological
functioning of PGD/HD families, families in which one of the parents will have
HD in the future, or in which the parent is already symptomatic.
Study objective
To gain insight (1) into psychological functioning of couples where one partner
is carrier of HD and who have PGD child(ren); and (2) into the family
interactions in these families.
Study design
Retrospective cohort-study by means of semi-structured interviews.
Study burden and risks
The study procedure consists of one interview, of which the adverse impact is
expected to be limited. The researcher is a psychologist and is able to
recognize signs of extreme stress and help the couple.
P. Debyelaan 25 25
Maastricht 6229HX
NL
P. Debyelaan 25 25
Maastricht 6229HX
NL
Listed location countries
Age
Inclusion criteria
Parents who have one or more children by means of PGD and for whom (proven) Huntington*s disease in one of the parents was the indication for PGD .
Exclusion criteria
Severe cognitive deficiency and psychiatric disturbances. If these are a consequence of Huntingtons disease, the unaffected partner, if available, will be approached for the interview.
Design
Recruitment
Followed up by the following (possibly more current) registration
No registrations found.
Other (possibly less up-to-date) registrations in this register
No registrations found.
In other registers
| Register | ID |
|---|---|
| CCMO | NL50498.068.14 |