FORWARD-MARCH 2026 Study Updates

The NFXF brought the Fragile X community together for another informative webinar featuring Dr. Elizabeth Berry-Kravis, one of the leading researchers in the field. During the webinar, Dr. Berry-Kravis shared updates on the CDC-funded FORWARD-MARCH study, highlighting new insights into Fragile X syndrome (FXS) and premutation health.

The Centers for Disease Control & Prevention (CDC) has been funding FORWARD Fragile X research since 2012, when it began supporting the development of the original FORWARD (Fragile X Online Registry With Accessible Research Database) study to collect data on individuals with FXS across multiple clinics nationwide. FORWARD-MARCH, the current phase of the study, builds on this long-standing CDC support and continues that work through a cooperative agreement awarded in 2021, making it part of more than a decade of CDC-funded Fragile X research.

Key Takeaways

• Federal funding makes long-term Fragile X research possible. The FORWARD-MARCH study, funded by CDC, builds on more than a decade of federally supported research tracking individuals with Fragile X from childhood into adulthood.
• Long-term studies change care, not just knowledge. Because of sustained federal investment, researchers can see how health, behavior, and development change over time; this is information that directly improves clinical care and services.
• FORWARD-MARCH is the largest Fragile X dataset in the U.S. This federally funded study brings together clinics, researchers, the CDC, and the National Fragile X Foundation to create real-world data that no single clinic could collect alone.
• Federal dollars expanded what the study can measure. CDC funding allowed FORWARD-MARCH to add in-person assessments of cognition, language, behavior, and autism, giving families and researchers a much richer picture.
• Families benefit directly from participation. Through the study, families receive comprehensive evaluations and reports they can use for all areas of life.
• Federal funding fills critical gaps, especially in adulthood. The study highlights how much more we still need to learn about adults with Fragile X, an area researchers are working to expand through continued federal support.
• Research access reaches families nationwide. Federal investment supports a national network of clinics and remote participation options, making research more accessible regardless of location.
• Without continued federal funding, progress stalls. Enrollment deadlines and study timelines are tied directly to CDC funding, showing how fragile progress can be without sustained investment.
• Federal research funding accelerates better treatments and supports. Data from FORWARD-MARCH helps guide future clinical trials, care recommendations, and policy decisions that impact families every day.

Helpful Links

• FORWARD-MARCH Database & Registry
• Study: Join FORWARD-MARCH!
• Locate a Fragile X Clinic