Other Studies

Emory University | Stanford University | Johns Hopkins University | Duke University

Emory University

The Emory University Department of Human Genetics is studying FMR1, the gene which causes fragile X syndrome, and how it may affect learning styles and neurological functioning. There are three studies that are currently recruiting participants.

Emory Study of Adult Learning

Adults, age 18-50 who have a family member with fragile X syndrome.

Study is investigating the FMR-1 gene and its effect on how people learn. Participants are asked to provide a cheek brush sample by mail. A smaller group will be asked to participate in follow-up educational testing at Emory University.

FMR-1 and Older Adults

Eligible participants: Men over 50 years of age with a premutation form of the fragile X gene. Non-carrier brothers who are over age 50 are also eligible.

Study participants will be reimbursed for their time and effort.

Study of Premature Ovarian Failure

Eligible participants: women ages 18-75 who have a family member with fragile X syndrome.
This study is investigating the FMR-1 gene and its effect on reproduction.

Participants are asked to provide a cheek brush sample by mail. A smaller group will be asked to complete a reproductive questionnaire and provide a blood sample.

For Information or to participate in any of the Emory studies contact:
Krista Charen Phone: 404-727-6025
kcharen@emory.edu

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Stanford University

Behavioral Neurogenetics Research Center

Longitudinal MRI Study

Participants: male toddlers and preschoolers (18 to 42 months) with fragile X syndrome, developmental delay, autism, and typical development.

Participants complete a three to four day evaluation including behavioral and cognitive testing and structural brain imaging (MRI). Practice materials and hands-on training will be provided prior to completion of the MRI scan.

This is a collaborative effort with the UNC Longitudinal MRI Study. Families living east of the Mississippi are invited to participate at UNC.

Contact: Heather Erba toll-free at 1-888-411-2672
Email: herba@stanford.edu

Sisters Study

Needed: Sisters ages 6-14, one with fragile X and one who is unaffected with the mutation
In-home evaluation by the Stanford FX research team
Contact: Ellen Van Stone Toll-free at 1-888-411-2672
Email: vanstone@stanford.edu

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Johns Hopkins University

Kennedy Krieger Institute

Cognitive Development Project: Girls with Fragile X Syndrome

Girls, K-3rd grade with the fragile X full mutation
A longitudinal study involving psychological and academic achievement testing. The testing will include measures of reading, mathematics, spatial reasoning, and other problem solving skills. Travel to Baltimore, MD or elsewhere, depending on state of residence.

Contact: Dr. Michèle Mazzocco, Principal Investigator (443) 923-4125
Gwen Myers, Project Manager at 443-923-4126
Email: myersg@kennedykrieger.org
Anne Henry, Research Assistant at 443-923-4121
Email: henrya@kennedykrieger.org

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Duke University

Medical Center
Division of Medical Genetics

Adolescent and Young Adult Females and the Genetic Risk for Fragile X

Females from 14-25 and their mothers in families in which FXS has been diagnosed
Three groups of participants : FX carriers; confirmed not FX carriers; and those who know there is a possibility but haven’t been tested for FXS.

Participation involves 2-3 hours of interview time at Duke University Medical Center in Durham, NC. If travel is not possible, contact Duke to inquire about other accommodations.

Contact: Allyn McConkie-Rosell, Ph.D. at 919-681-1949
Email: mccon006@mc.duke.edu

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