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Clinical Phenotyping of Individuals with Marbach-Schaaf neurodevelopmental syndrome (MASNS)

Clinical Phenotyping of Individuals with Marbach-Schaaf neurodevelopmental syndrome (MASNS)

Status
Recruiting
Phases
Unknown
Study type
Observational
Source
DRKS
Registry ID
DRKS00039978
Enrollment
15
Registered
2026-04-16
Start date
2026-04-01
Completion date
Unknown
Last updated
2026-04-27

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

Conditions

692173

Interventions

Group 1: The study is planned to be conducted at the Genetics Clinic of Heidelberg University Hospital. Patients with a previously diagnosed pathogenic variant of PRKAR1B, along with their parents or

Sponsors

Institut für Humangenetik
Lead Sponsor

Eligibility

Sex/Gender
All

Inclusion criteria

Inclusion criteria: A previously identified pathogenic variant in the PRKAR1AB gene Written informed consent for study participation from the parents or guardian(s).

Exclusion criteria

Exclusion criteria: No written consent to study participation by the subject/guardian

Design outcomes

Primary

MeasureTime frame
The study is a monocenter study, designed as a Clinical Phenotyping Study. The study is prospective and exploratory in design, aiming to assess the sensitivity, cognitive, metabolic and hormonal phenotypes of a group of individuals with a rare genetic abnormality. The study is limited in the number of subjects to be included, and will consist on aproximately 15 patients. There will be no group assignment. There is no placebo group and there are no control subjects. Clinical information will be used, when available, and medical histories will be obtained if the clinical information is not available. Study-related measures: - Pain and temperature phenotype assessment - Speech and movement assays - Cognitive testing - Regression assessment - Laboratory assays (lipid panel, glucose, HgbA1C, growth hormone, ghrelin and leptin, salivary cortisol)

Countries

Germany, Italy, Ukraine, United Kingdom, United States

Contacts

Public ContactChristian Schaaf

Institut für Humangenetik

Christian.Schaaf@med.uni-heidelberg.de+49 6221 56-5151

Outcome results

None listed

Source: DRKS (via WHO ICTRP) · Data processed: May 1, 2026