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Research Project
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 190 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. 

Research Project Request for
FOXP1 Participation
FOXP1 Syndrome Rare genetic disorders Developmental delay disorder Genetic mutations awareness

3.  Summary description of the study including the following:

3F. Would you accept more participants then the number selected about?

Thanks for submitting your research project with the International FOXP1 Foundation. We will get back to you as soon as possible. If you have any questions please email info@foxp1.org.

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