FORWARD-MARCH — Now Open for Enrollment!

A Brief History of FORWARD:

Over the past 15 years, CDC has funded four FORWARD Fragile X studies to expand understanding of Fragile X syndrome (FXS). The NFXF has been coordinating study efforts since the beginning and has been vital in ensuring its success.

The first study was launched in 2008 and piloted an infrastructure to study FXS across multiple sites. The Fragile X Clinical and Research Consortium was established and consisted of a network of FXS specialty clinics across the United States who engaged in collecting data. The second study developed FORWARD and piloted the infrastructure for a registry and for longitudinal data collection to support analysis of data over time in a large cohort. The third study expanded FORWARD infrastructure even further. The data collected in FORWARD advanced knowledge about FXS, its co-occurring conditions, and outcomes.

On September 01, 2021, the Centers for Disease Control and Prevention (CDC) issued a 5-year award to continue to build upon the foundation of the three prior FORWARD grants in collaboration with CDC’s Study to Explore Early Development (SEED) Follow-up Study. This current study is called FORWARD-MARCH.

What is FORWARD-MARCH?

FORWARD-MARCH is the next step following a highly successful research study called FORWARD (Fragile X Online Registry With Accessible Research Database) that was started in 2012.

The FORWARD study created the largest database of information on FXS in the United States. Data from the FORWARD study is being used by researchers to learn about the lives of people with FXS. Thanks to families who contribute to FORWARD, researchers are learning about important things like medication use, behaviors, and development over time. These findings are shared with other researchers and clinicians in order to help develop targeted therapies and treatments.

The FORWARD-MARCH (Multiple Assessments for Research Characterization) project will collect more detailed information from participants with FXS and add it to the existing FORWARD database. FORWARD-MARCH continues the mission of FORWARD to better understand FXS in order to improve the lives of children and adolescents with FXS and the lives of their families.

Who Can Participate in FORWARD-MARCH?

Individuals with FXS born between 2003 and 2017 are eligible to participate in FORWARD-MARCH. This includes participants who were previously enrolled in the FORWARD study and those new to FORWARD.

What Does Participation in the Study Look Like?

The FORWARD-MARCH project will collect survey data from parents and caregivers and conduct several tests with participants to understand their cognition (thinking), language, behavior, and autism characteristics. Combined with information already collected in the FORWARD study, FORWARD-MARCH will also better define paths of development in FXS.

This is important in understanding the long-term effects of interventions and treatments designed to help people with FXS develop to their full potential.

The more individuals who enroll and participate, the more helpful this study will become in helping researchers understand FXS across the human lifespan. Your child’s participation will help healthcare professionals and educators create better therapeutic and educational programs that could benefit millions of individuals with FXS throughout the world.

How Can I Enroll My Child in the Study?

If you would like to join FORWARD-MARCH, please contact the Fragile X clinic nearest you. Not all clinics participate in the study, Look for “This clinic participates in the FORWARD-MARCH study” at the bottom of each clinic listing. 

FIND A FRAGILE X CLINIC

A Note about Privacy

Records of participation in this research study will be maintained and kept confidential as required by law. This research project has a Certificate of Confidentiality from the Centers for Disease Control and Prevention that provides additional protection from involuntary disclosure of information collected in the study.

This project was made possible by Cooperative Agreement 1 U01DD001298-01-00 from the Centers for Disease Control and Prevention.

Results: Publications Resulting from FORWARD Data

FORWARD data can be used in a variety of ways:

We are excited to share journal publications resulting from FORWARD data, with many more papers currently in development! The future for FXS research is bright as more rich data are gathered.

  • Young boy at a desk with a mosaic background.

Mosaicism in Males with Fragile X Syndrome

By |

FORWARD // Participants with methylation mosaicism tended to have less severe intellectual disability and better social and functional skills. Knowing more about how FXS differs in people with and without methylation mosaicism may eventually help guide expectations and treatment of individuals with FXS.

Thank You

THANK YOU to all participating families for your willingness to share your life experiences for research. By giving families, doctors, scientific researchers, and policymakers an inside look into how FXS presents itself across the human lifespan, we can facilitate the actions needed to reach more positive health outcomes and an improved quality of life. Your participation in FORWARD will lead to better care and services for future generations affected by FXS.

FORWARD is supported by cooperative agreements #U01DD000231, #U19DD000753 and # U01DD001189, funded by the Centers for Disease Control and Prevention. This content is solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention or the Department of Health and Human Services.

author
Author Dan Whiting

Amie Milunovich
Amie joined the NFXF in 2015 and serves as the FORWARD national coordinator. She has eight years of experience coordinating clinical research trials. Amie was a research assistant and research coordinator for numerous clinical trials at several programs. Amie holds a bachelor’s degree in family and consumer science and is a SOCRA certified clinical research professional (CCRP). She enjoys Bikram yoga, painting, cooking, and spending time with family and friends.

Questions?

If you have questions about anything research-related, we’d love to hear from you! You can reach out to Hilary Rosselot directly, or submit your question or comment through our contact form below.

Hilary Rosselot headshot

Hilary Rosselot, Director of Research Facilitation
 hilary@fragilex.org | (202) 747-6208

Last Updated: 12/31/2020

step one — the fragile x clinic

Contact your Fragile X clinic and ask to participate in the study. If you have not visited a Fragile X clinic, use our interactive map using the button below and let them know your wish to participate when you call to make an appointment.

Candidates are informed of the study details during their clinic visit. If you do consent to participate, your de-identified data will be shared for research purposes.

FIND A FRAGILE X CLINIC
step two — the registry

Registry participation requires completion of a short, one-time form, which has the potential to connect researchers to the prospective clinical study candidate.

All family members may be eligible to participate:

  • Full mutation.
  • Premutation (with or without symptoms).
  • Non-carrier.
step three — the database

Only participants who have FXS are invited to join the FORWARD Database.

Before or during the first clinic visit, a parent or caregiver will be asked to complete several questionnaires related to the participant’s health and behavior.

Subsequent visits occur annually, either virtually or in person. At these visits, the parent or caregiver will be asked for updates about the participant’s health information.