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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.
Join the International FOXP1 Foundation
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.
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.
STRIPES study
Dr. Emily Neuhaus, a psychologist from the University of Washington, invites you to join a new study to understand more about the research experiences, interests, and priorities of families in the FOXP1 community. By better understanding family perspectives, we hope to make our research as relevant, worthwhile, and helpful as possible. To do this, we have launched the STRIPES study, a fully online survey for caregivers of individuals with genetic conditions. Participation is simple -- caregivers can enroll online at any time, and can complete the survey without any phone calls or study visits needed. To join, follow the link below or email Dr. Neuhaus at eneuhaus@uw.edu with questions.
More information or to enroll: https://redcap.link/uwstripes