Datos de
FOXP1 Programa de recogida de datos
Every piece of data shared by individuals and families living with FOXP1 syndrome helps researchers better understand the condition and identify potential treatment paths. Your participation isn’t just valuable — it’s essential to driving progress, uncovering patterns, and speeding up the search for a cure.
1. Join the International FOXP1 Foundation
2. Participate in the RARE-X Data Collection Program
RARE-X is a secure, patient-reported data platform that collects information about your child’s genetics, symptoms, medical history, and daily experiences — directly from you. This firsthand insight is essential to helping researchers understand the full picture of FOXP1 syndrome and identify patterns that might otherwise be missed.
3. FOXP1 Citizen Health
Citizen Health is a clinician-reported data platform designed to build a more complete medical understanding of FOXP1 syndrome. By securely sharing medical records and clinical insights directly from your child’s healthcare providers, researchers gain access to high-quality, standardized data that complements parent-reported information.
4. Developing a CGI Scale for FOXP1 Syndrome
Dr. Paige Siper, from the Seaver Autism Center at Mount Sinai, is leading a clinical project to develop a Clinical Global Impression (CGI) scale specifically for FOXP1 syndrome. This important work aims to create a standardized way to measure change in symptoms over time — a key step in preparing for future clinical trials and meeting FDA and regulatory standards.
Your participation could help lay the groundwork for treatment studies and ensure the FOXP1 community is trial-ready.