A centralized board for clinicians and researchers detailing active natural history studies, patient registries, and upcoming interventional clinical trials for CLTC-ID. Referring patients to these initiatives is the single most effective way to accelerate therapeutic development.
Longitudinal natural history studies are critical precursors to interventional trials, providing the baseline metrics against which future therapeutics will be measured.
An international research program studying over 175 rare genetic neurodevelopmental disorders, including CLTC. They collect longitudinal medical data, developmental histories, and blood/saliva samples (with consent) to create a robust, de-identified database available to researchers worldwide.
This portal hosts an internal registry designed to quickly connect patients with similar variants and map geographic distribution. While less exhaustive than Simons Searchlight, it serves as a rapid-response network for trial recruitment and patient advocacy mapping.
Visit the Registry →There are currently no active, recruiting Phase I-III pharmacological or gene-therapy trials specifically targeting CLTC-related intellectual disability.
Patients may be eligible for generalized epilepsy trials or symptomatic management studies depending on their specific phenotype. Check ClinicalTrials.gov for broad-spectrum NDD studies.