Request for FOXP1 Participation
The International FOXP1 Foundation (IFF) is eager to support research into FOXP1 syndrome. Towards that end and to help us manage the demand on our families to contribute to research studies, the IFF has established a data collection program which currently includes information on over 160 FOXP1 individuals. It is the largest repository of patient/family-reported data about FOXP1 syndrome, including demographics, medical history, and genetic data as well as longitudinal symptom surveys and clinical outcome assessment measures. Data from this community are made available to researchers on a patient-level basis, and updated every month without the need for repeat data requests. Therefore, if you would like to request access to these data, please follow this link: RARE-X Data Access Request
If the RARE-X data do not meet your data needs, or you have additional research ideas to share with the IFF, we ask that you complete the following form. We will provide a response to your principal investigator (PI) within a few weeks. Please note "*" indicates a required field.