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

PI First name

PI Last name

Institution/Organization Name

Primary contact first name if not PI

Primary contact last name if not PI

Coordinator/primary contact Email

Phone

Institution/Organization URL

1. Descriptive title of this study

2. Primary purpose of this study (1-2 sentences)

3. Summary description of the study including the following:

3A. Scientific background

3B. Significance for patients and/or families

3C. Specific aims/Research questions

3D. Research methods

3E. Target number of participants

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

Yes

3G. Plans for dissemination of research findings

3H. Plans for collection, analysis, and storage of biosamples for potential future use

3I. Timeline for this project

3J. Non-Technical Summary suitable for sharing with the FOXP1 community. Please ensure the text is written at a high school reading level or below

Thanks for submitting your research project with the International FOXP1 Foundation. We will get back to you within the next few weeks. if you have any questions please email info@foxp1.org

Research Project Request for FOXP1 Participation

Research Project Request for FOXP1 Participation

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Research Project
Request for FOXP1 Participation

Research Project Request for
FOXP1 Participation