FORWARD-MARCH — Now Open for Enrollment!
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 Fragile X syndrome (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.
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:
- Help inform new treatments and therapies for individuals with FXS.
- Help develop resources to help families, such as the NFXF Treatment Recommendations documents and the Adult eBook.
- Demonstrate the need and direction of future, more in-depth research.
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.
Latent Class Analysis Identifies Distinctive Behavioral Subtypes in Children with Fragile X Syndrome
FORWARD // Among the different models resulting from the latent class analysis, a 5-class solution yielded the most clinically meaningful pharmacotherapy-independent behavioral subtypes.
Examination of Correlates to Health-Related Quality of Life in Individuals with Fragile X Syndrome
FORWARD // We examined the nature and degree of association between health-related quality of life and established measures of functioning in FXS; 155 parents completed the questionnaires on their child as part of the larger CDC-funded FORWARD study.
Height and Body Mass Index in Fragile X Syndrome: A Longitudinal Assessment
FORWARD // These findings warrant increased attention to obesity prevention for all individuals with FXS.
Longitudinal Trajectory of Seizures in Fragile X Syndrome
FORWARD // This study adds to the understanding of the characteristics, risk factors, and course of seizures in FXS and provides a basis for anticipatory guidance for clinicians and families.
Mosaicism in Males with Fragile X Syndrome
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.
Psychotropic Drug Treatment Patterns in Persons with Fragile X Syndrome
FORWARD // This study contributes to the limited understanding of psychopharmacologic management of IAAS in FXS and will help guide future treatment.
Sleep Problems in FXS: Cross-Sectional Analysis of a Large Clinic-Based Cohort
FORWARD // Findings showed that sleep difficulties are prevalent in children with FXS and, although they tend to be mild, they are associated with behavioral problems and negative impact to families.
Development of Neural Response to Novel Sounds in Fragile X Syndrome: Potential Biomarkers
FORWARD // Despite an overall normal developmental trajectory for most measures, individuals with FXS show age-independent but gender-dependent decreases in complex processing of novel stimuli.
Factor Structure of the Aberrant Behavior Checklist in Fragile X Syndrome
FORWARD // There may be circumscribed times when the new algorithm may be appropriate for scoring, namely when anxiety or social avoidance constructs are the central and unequivocal domains of interest.
Opinion Article: Autism Terminology and Clinical Practice
FORWARD // The simplified diagnosis of ASD, which merged previous diagnoses into a single disorder, has led to its use in plural (autism spectrum disorders) for different purposes.
Assessment of Social Interaction in Fragile X Syndrome
FORWARD // An efficient and direct measure of social interactions and autism symptoms is needed for Fragile X syndrome research and clinical care.
Repetitive Behaviors in Fragile X Syndrome
FORWARD // These findings build on the current understanding of RRBs in Fragile X syndrome based on gender and comorbid ASD.
FXS & Language Across the Lifespan
FORWARD // Caregiver reports tended to give lower estimates of language ability than what was found using an objectively administered assessment.
Preventive Care Services in Fragile X Syndrome
Research Summary // About nine out of 10 children and young adults with Fragile X syndrome received the immunizations recommended by CDC between birth and 18 years of age.
Drug Interventions for IAAS in Fragile X Syndrome
Research Summary // A regularly cited group of behaviors in individuals with Fragile X syndrome, particularly males, is irritability, agitation, aggression and self-injurious behaviors.
ASD Diagnosis in Fragile X Syndrome
Research Summary // Intellectual disability and co-occurring mental health conditions can be interpreted as autistic features, making it difficult to diagnose in FXS.
Early Life Language Development in Fragile X Syndrome
FORWARD // This study is one of the first to examine early language development through vocal production and the language learning environment in infants and toddlers with FXS utilizing an automated vocal analysis system.
The Future of Fragile X Syndrome
Research Summary // The present challenge is to move from accurate diagnosis to public health action for FXS, requiring better understanding of the natural history of FXS.
Predictors of Attendance at Fragile X Clinics
Research Summary // Samples showed that children who attended Fragile X clinics were mostly male, high-school aged or younger, and white, non-Hispanic.
Cliniciansʼ Experiences with the Fragile X Clinical and Research Consortium
Research Summary // Suggestions for improvement included additional financial support and increased utilization of collected patient data for research purposes.
Importance of Fragile X Specialty Clinics
Research Summary // Appropriate clinical management of affected individuals and their family members have become critical in addressing medical needs to improve quality of life.
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
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, Director of Research Facilitation
hilary@fragilex.org | (202) 747-6208
Last Updated: 12/31/2020