Welcome to the Neurodevelopmental Disorders Lab at the University of South Carolina! Our lab is dedicated to understanding the development of infants and children with neurodevelopmental disorders. Our current study aims to investigate early development for infants with fragile X syndrome and the fragile X premutation. This longitudinal study aims to characterize the relationship of physiological arousal to development across infancy in children with FMR1-associated conditions.
We are currently recruiting infants that:
- Have fragile X syndrome (12 months or younger)
- Have fragile X premutation (12 months or younger)
- Are experiencing neurotypical development (6 months or younger)
What does study participation entail?
- Assessments (lasting 2-4 hours each) at 6, 9, 12, and 24 months either at your home or at the University of South Carolina
- Summary reports of your child’s development by infant development experts
- Compensation for participation (up to $425 total)
Visits will consist of direct, in-person assessments of your child’s developmental skills, as well as interviews and questionnaires with you, the parent(s), regarding your own experiences and perceptions of your child’s development. Assessments are scheduled at a time convenient for your family, including weekends and evenings. The study also includes an optional blood draw component to assess molecular-genetic markers associated with the FMR1 gene.
Interested in Participating?
If you would like to learn more or are interested in enrollment, please complete our interest form or contact us at [email protected] or 803-777-5676!
Frequently Asked Questions:
How are assessments scheduled?
Our assessment team works with you to find a day and time that works best for you based on you and your child’s availability and preferences, accommodating work schedules, nap times, feedings, etc. We offer flexibility in scheduling, including offering times on weekends and evenings.
How rigidly do we have to follow the target time points?
It is important that we try to capture your child’s development close to the target ages (6 months, 9 months, 12 months, and 24 months). Assessments are typically scheduled within two weeks of the target age.
Where do assessments take place?
Assessments can take place at your home, at the University of South Carolina (where the NDD Lab is based), or at a neutral location near your home (e.g., hotel). Most families opt for assessments to take place in the comfort of their home, but assessment locations are set based on your preference and convenience for each assessment timepoint. If you choose to travel to the University of South Carolina, associated travel costs will be reimbursed.
What if I only want to participate once or twice?
The data we collect is valuable from a longitudinal standpoint and so we ask that you enroll only if you think that you could commit to following up with us at each time point. Of course, we understand that family matters or other unpredictable circumstances may prevent us from assessing according to this schedule and participants may withdraw at any time.
What if I plan on moving?
In most circumstances, we will continue to do assessments as planned, whether the move is across the state or the country.
Are there costs associated with participation?
There are no costs directly associated with participation. Families that opt to travel to the University of South Carolina to complete an assessment(s) will incur some initial expense, but all travel costs associated with your participation will be either directly covered or reimbursed for the participating child and an accompanying adult.
For local families within driving distance of the lab, families will be reimbursed for mileage if traveling 25 miles or more.
For families flying to USC, two to three days of travel expense are generally covered, and lab staff will work with families to help coordinate travel arrangements. Associated expenses that the lab can directly pay for on your behalf include flights, rental car, and lodging. Other incurred expenses (e.g., gas for the rental car, airport parking fees, meals) will be reimbursed upon completion of the visit. If families opt to extend their visit to include personal days of travel, lab staff will help coordinate arrangements to ensure applicable assessment-related costs are covered or reimbursed.
Will you diagnose my child?
No. The purpose of this study is to analyze early development from a behavioral and physiological perspective. If you are seeking to be diagnosed or to receive other services, we will do our best to help you find community resources to meet your needs but are not able to give you a medical diagnosis.
Is my personal data kept confidential?
Your data is always kept confidential, and your name and personal information would never be published in a research study or poster presentation, in keeping with the regulations of our university’s Institutional Review Board. The de-identified data you provide is extremely valuable and is used to publish papers and present at conferences throughout the year.
Will we be able to see the results and how will they be relayed to us?
Following each assessment, we will email you a brief summary report of your child’s abilities, highlighting their development over the course of the study. The data we collect is also used to publish papers and present at conferences, and our publications are available on our website or can be sent to you upon request. We often also highlight findings from our publications on our website, social media pages, and annual newsletter.
Will I receive monetary compensation for participation?
Yes! Families can receive up to $425 total for participation. Following each assessment, families will be emailed a link to receive a gift card (Visa, Amazon, Walmart, or Target). Gift card amounts are as follows:
6 months: $75 | 9 months: $75 | 12 months: $100 | 18 months: $25 | 24 months: $150
Are blood draws required? Why is a blood draw requested?
Completion of a blood draw at one point during the study is requested for all participants with fragile X syndrome or the fragile X premutation but is not required for study participation. If you are interested in having a blood draw completed, it can be completed at any time throughout the study, and research staff can assist you in identifying a physician or outpatient lab of your choice.
Blood samples will be analyzed using new, cutting-edge analyses for molecular-genetic markers, including CGG repeat length and fragile X messenger ribonucleoprotein (FMRP) levels, to assess how molecular-genetic markers relate to developmental trajectories.
