Participate In Research

Community

FOXP1 syndrome was only recently described. A lot remains to be learned about FOXP1 and this complex neurodevelopmental syndrome. This page explains why your participation in research will ultimately help speed development of therapies and drug treatments, and highlights several ongoing projects enrolling families like yours.

The Power of Community Data

Why Your Participation Matters

FOXP1 syndrome is extremely rare, affecting approximately 1000 known individuals worldwide (many more remain undiagnosed).
That rarity means researchers have limited access to the data they need to understand the condition fully, design effective clinical trials, and develop treatments.
The FOXP1 community itself is one of the most powerful resources available to science.
Families advance the field directly by contributing through patient-reported, clinician-reported, and formal research studies.
The RARE-X Data Analysis of December 2023 surfaced six symptoms not yet in the published literature: sleep disturbances, impulsivity, hypotonia, abnormal muscle function, abnormal bladder function, and constipation.
Every family that takes part makes the dataset richer, the research more accurate, and the path to treatments shorter.

<1,500

Diagnosed worldwide

New symptoms surfaced by RARE-X data (Dec 2023)

Ongoing research projects into FOXP1 syndrome

Successful research relies on us for data

Ongoing Programs

Data Collection Programs

Two secure platforms designed to complement each other — one capturing the family perspective, the other the clinical perspective.

Patient-reported

RARE-X Data Collection Program

RARE-X is a secure, patient-reported data platform that captures information directly from you — the family — so researchers can see the full picture of FOXP1 syndrome and identify patterns that might otherwise be missed.

Collects genetics, symptoms, medical history, and daily experience data.
Foundation-partnered, protected database — preview available as of May 2023.
Impact grows as more families enroll and update their data over time.
How to participate: enroll, complete the surveys, and upload your child's genetic report.

Clinician-reported

FOXP1 Citizen Health

Citizen Health is a clinician-reported data platform that builds a more complete medical picture of FOXP1 syndrome from your child’s healthcare providers.

Open Studies

Current Research Studies

The following studies are currently seeking participants from the FOXP1 community. Please verify current enrollment status directly with the study team before applying.

Recruiting

The FOUND Study

University of California, Los Angeles (UCLA) · Dr. Rujuta B. Wilson, MD

A longitudinal study seeking to fill important gaps in knowledge about the neurodevelopmental features of FOXP1 syndrome.

Who can participate: Families living in North America with a child between the ages of 1 and 20 who has a confirmed FOXP1 diagnosis.

What is involved: Takes place over one year — baseline evaluation, 6-month follow-up, and 12-month follow-up. Assessments cover motor, language, behavioral, cognitive, and autism symptom profiles. Available in-person at UCLA and virtually.

Compensation: $50 baseline + $25 at 6 months + $25 at 12 months ($100 total). Includes verbal and written feedback on assessment results.

Contact: found-study@mednet.ucla.edu

Recruiting

The STRIPES Study

University of Washington · Dr. Emily Neuhaus

A fully online survey for caregivers of individuals with genetic conditions — aimed at understanding FOXP1 family research priorities.

Who can participate: Caregivers of individuals with genetic conditions. No phone calls or study visits required.

What is involved: A fully online survey that can be completed at any time. Simple and flexible.

Contact: eneuhaus@uw.edu

Recruiting

FOXP1 Immune Study

LSU Health Sciences Center · Dr. Luke Wall and Dr. Caroline Gueniot

A study examining immune health and infection history in individuals with FOXP1 mutations.

Who can participate: Parents or caregivers who have one child of any age with a FOXP1 mutation and at least one unaffected sibling.

What is involved: A one-time, anonymous online survey (approximately 15 minutes). Participation is voluntary.

Contact: lwall@lsuhsc.edu · clawl1@lsuhsc.edu

The Speech Tracker Study

Murdoch Children's Research Institute, Australia · Dr. Ruth Braden

Examining communication development over time in individuals with FOXP1-related disorder to inform more targeted speech therapies.

Who can participate: Individuals confirmed to have a FOXP1-related disorder through genetic testing, aged 6 months to adulthood, verbal or non-verbal, who speak English, German, Dutch, Italian, French, Portuguese, or Spanish.

What is involved: Brief online surveys of language skills once a year, and a 15-minute speech task completed from home twice a year.

Contact: speechtracker@mcri.edu.au

Ongoing, closed to recruitment

Every family counts

Joining the census helps us understand and support everyone affected.

Community Census

Join the FOXP1 Community Census

By joining the International FOXP1 Foundation, you will be added to our global census — helping us better understand and support everyone affected by FOXP1 syndrome. You will also receive important updates on research, events, and resources tailored to families and caregivers.

For Researchers

Are You a Researcher?

If you are a researcher interested in accessing FOXP1 community data or inviting the community to participate in a study, the International FOXP1 Foundation welcomes your inquiry. Please complete the research participation request form and we will be in touch.

Stay Informed

Never Miss a Research Opportunity

New research studies and data collection opportunities are announced through the Foundation’s monthly newsletter and social media channels. Sign up so you never miss a chance to contribute.