Posted at February 12, 2013 | By: | Categories: Opportunities for families | 2 Comments

CIDD at UNC Chapel Hill: Looking for Infants with FXS Between 0-6 Months of Age

This announcement has been posted as a courtesy by the National Fragile X Foundation (NFXF) on behalf of University of North Carolina at Chapel Hill and Washington University in St. Louis. The announcement and the parties conducting and sponsoring the research meet guidelines established by the NFXF regarding relevancy and appropriateness to Fragile X. The NFXF takes no position and makes no claims as to the potential benefits of the study including those studies involving medications, and cannot be responsible for any outcomes, lack of outcomes or unintended side effects. Your name or other personal information have not been shared with the researchers/company/institution. If interested in participating in this research, it is your responsibility to use the contact information in this announcement. Additional opportunities for being part of research studies can be found at research.fragilex.org.

The Carolina Institute for Developmental Disabilities (CIDD) at the University of North Carolina at Chapel Hill would like to inform you of an exciting new research opportunity available to families with infants who have a child diagnosed with fragile X.

This multi-center study involves the collaboration of two sites which are part of an NIH-funded network (University of North Carolina at Chapel Hill, and Washington University in St. Louis, MO). At UNC, the lead investigator is Heather Cody Hazlett, PhD., she is well known in the field of developmental disabilities, and is currently assisting and leading four studies within the field of developmental disabilities. Currently, we are searching for 30 participants in the United States who meet the following criteria:

  • Are between 0-6 months of age (parents who are expecting may also be eligible)
  • Have diagnosis of fragile X (full mutation or premutation)

Once a family is enrolled in this study, they will travel to either Chapel Hill, NC or St. Louis, MO for a comprehensive series of developmental, non-invasive assessments completed on the infant at the 6, 12 and 24 month time periods. Also, during this trip the infant will receive an MRI scan while they sleep. Between visits to the assessment site, there will be phone conversations, genetic and environmental data collection.There is no cost for family participation. All travel and lodging costs are reimbursed by the study, and any services the study provides are at no charge to the family. Families will receive feedback on the assessments and each MRI scan. I would like to speak with you further about participating in this research. Please do not hesitate to contact me either by email or phone for more information.

Participating in this study is not the only way to get involved! If this does not sound like something you are currently interested in, please consider sharing this information with your friends and family who may be interested in participating.

Thank you for your time. I look forward to speaking with you soon!

Regards,
Heidi Bryant
heidi.bryant@cidd.unc.edu

www.fragilexregistry.org

Carolina Institute for Developmental Disabilities
UNC-Chapel Hill, CB# 3367
Chapel Hill, NC 27599-3367
Phone: (919) 966-5278
Toll-Free: 800) 793-5715
Fax: (919)843- 3825


IRB Approval ID 114151