RecruitingNCT07372833

CAMK2-related Synapthopathies Natural History Study

Natural History Data of International Subjects With an ULTRA-Rare Neuro Developmental Disorder as Part of the ENCORE Expert Clinics, Specifically CAMK2A, CAMK2B, CAMK2D, and CAMK2G.


Sponsor

Erasmus Medical Center

Enrollment

150 participants

Start Date

Feb 9, 2021

Study Type

OBSERVATIONAL

Conditions

Summary

The key endpoint for this prospective cohort study is: Mapping of the disease course of all known patients (both children and adults, international) with a CAMK2 mutation, for which ENCORE has founded an expert clinic, and therefore has a substantial and active neuroscientific research arm combined with tertiary academic clinical care delivery for those living in the Netherlands. Such robust clinical maps can subsequently be used for genotype-phenotype correlations and, identify clinically relevant outcome measures for prognostication, improvement of care delivery \& future clinical trials. Additionally, it will most likely generate new research questions for basic scientists who are trying to unravel the specific mechanisms of disease pathophysiology.


Eligibility

Inclusion Criteria2

  • Subject with a (likely) pathogenic variation in one of the CAMK2 genes
  • Consent for anonymous registration in an (inter)national database

Exclusion Criteria1

  • \- Subjects with a Variant of Unknown Significance (VUS); in those cases functional analysis should be performed first.

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Interventions

OTHERNo intervention

This is an observational study without interventions.


Locations(1)

Erasmus MC

Rotterdam, South Holland, Netherlands

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NCT07372833