CoDeLaGe A translational cohort study on self-injurious behaviour in people with Cornelia de Lange Syndrome

CoDeLaGe A translational cohort study on self-injurious behaviour in people with Cornelia de Lange Syndrome - SIB in CdLS

Status

Active, not recruiting

Phases

Unknown

Study type

Observational

Source

NL-OMON

Registry ID

NL-OMON44024

Enrollment

Registered

2012-07-10

Start date

2012-07-17

Completion date

Unknown

Last updated

2024-04-29

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

self-destructive behavior self-injurious behavior

Interventions

None listed

Eligibility

Age

2 Years to 99 Years

Inclusion criteria

Inclusion criteria: People with CdLS 1-molecularly confirmed 2-defined by clinical criteria and molecularly analysed for the known mutations, but not (yet) confirmed

Exclusion criteria

Exclusion criteria: People with CdLS with parents or caregivers who are insufficiently fluent in Dutch to understand sufficiently information letters and questionnaires.

Design outcomes

Primary

Measure	Time frame
-genetic profile by molecular gene analysis -behavioural and neuropsychological phenotype with respect to SIB -physical phenotype with respect to SIB -severity scores with respect to SIB	—

Secondary

Measure	Time frame
Correlation between the above mentioned primary characteristics.	—

Countries

Netherlands

Outcome results