Skip to content

HD-med: A longitudinal, observational study to assess medication use, medication efficacy and the role of pharmacogenetics in Huntington*s Disease.

HD-med: A longitudinal, observational study to assess medication use, medication efficacy and the role of pharmacogenetics in Huntington*s Disease. - HD-med: Pharmacogenetics in Huntington*s Disease

Status
Active, not recruiting
Phases
Unknown
Study type
Observational
Source
NL-OMON
Registry ID
NL-OMON55123
Enrollment
391
Registered
2019-11-26
Start date
2020-01-15
Completion date
Unknown
Last updated
2025-09-08

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

Conditions

Huntington's Disease

Interventions

None listed

Sponsors

Leids Universitair Medisch Centrum
Lead Sponsor

Eligibility

Age
18 Years to 99 Years

Inclusion criteria

Inclusion criteria: - A capacitated individual, aged >= 18 years. - Genetically confirmed CAG-repeat expansion of >= 36 in the Huntingtin gene. - Either about to start with prescribed medication related to HD or already using one or more HD related drugs. HD-related drugs are drugs considered to treat symptoms that either are related to manifest HD or are prescribed in pre-motor manifest or prodromal HD stage for symptoms that may be attributed to HD. - Sufficient knowledge of the Dutch language to understand the subject information letter and sign the IC.

Exclusion criteria

Exclusion criteria: Any medical condition, in the view of the investigator, which might endanger subject*s safety and/or satisfactory participation in the study.

Design outcomes

Primary

MeasureTime frame
Percentage definite prescription changes in HD gene carriers with a divergent PGx CYP2C19 or CYP2D6 phenotype (poor and ultra-rapid metabolizers) versus those with a PGx phenotype in more normal range (extensive and intermediate metabolizers).

Secondary

MeasureTime frame
Secondary study parameters/endpoints: - Overview of medication use by HD gene carriers in one year. - Accuracy of a one-year medication diary compared to pharmacy medication history surveys. Exploratory study parameters/endpoints - Identify potentially new genetic polymorphisms with pharmacogenetic action in HD gene carriers.

Countries

Netherlands

Outcome results

None listed

Source: NL-OMON (via WHO ICTRP) · Data processed: Feb 6, 2026