Fragile X Alliance of Ohio

The mention of any product, establishment or website is not intended to imply endorsement by the Fragile X Alliance of Ohio

Home

Contact Us

Basic Info About FX

Local Agencies

Fragile X & Related Sites

Upcoming Conferences

Recreation

Respite

Summer Camps

Research Studies

Miscellaneous!

The Fragile X Research Registry
Visit online:
www.ndrc.unc.edu/~FXSRegistry
or call: 1-866-744-7879
The University of North Carolina at Chapel Hill

Research Study Announcement
Brain Development in Infants with Fragile X Syndrome
Participants needed:
* Children 0-6 months old with a diagnosis of Fragile X or
* Expectant mothers carrying a child diagnosed with Fragile X or
* Babies between 6-12 months may be eligible

For information, you may view a video about the study at www.fragilexregistry.org/studies
or contact the project recruiter, Leslie Braddy Payne at 1-800-793-5715 or email lbraddy@med.unc.edu.
This will not obligate you to participate.


University of South Carolina
Dr. Jane Roberts has been conducting research in fragile X syndrome for 15 years.  Our current focus is on early detection of social and behavior problems so we can promote early identification and treatment.  We are currently recruiting male and female infants ages 3-12 months with either full mutation fragile X or the fragile X premutation to participate in a longitudinal study investigating general developmental characteristics, as well as the emergence of autistic symptoms within fragile X.  Our design involves 3 assessments with two family visits (we come to the family’s community) when the infant is 9 and 24 months and a lab visit to the University of South Carolina when the infant is 12 months.


I have attached a PDF version of a brochure that includes more information about our lab and current research. Interested families may also reach me personally by e-mail (USCDevLab@gmail.com) or phone (843-810-0238). They may also visit our web site (http://www.uscdevlab.com). I am happy to share more information about our study or answer any questions. We would greatly appreciate your help recruiting these infants in ways you think are best.  Bridgette Tonnsen
CLICK HERE FOR BROCHURE


Fragile X Research Study
Compensation is provided for your time as well as travel and accommodations.


Seeking Participants with a Diagnosis of Fragile X Syndrome

 

Research at Beth Israel Deaconess Medical Center in Boston is investigating cortical plasticity in individuals with autism spectrum disorders and Fragile X syndrome using noninvasive transcranial magnetic stimulation.

 

• Transcranial magnetic stimulation (TMS) is an experimental way to transiently activate specific brain areas through the scalp that has been used for the past 20 years in neurology and psychiatry. Safety guidelines have been developed that will be closely followed.

 

• Study involves up to 7 visits.

 

• Subjects will be asked to undergo a neurological exam, neuropsychological assessments, MRI, and TMS.

 

• Study Eligibility:  Subjects must be 15-65 years of age, diagnosed with autism spectrum disorders or Fragile X syndrome have no known history of neurofibromatosis or tuberous sclerosis, cerebral palsy, frank neurological damage, or significant dysmorphology.

 

• Subjects will be compensated $60 per session for their participation.

 

If you are interested, or to learn more, please contact Lindsay Oberman at 617-667-5247 or loberman@bidmc.harvard.edu


Dr. Stephen Warren, Director
Emory Fragile X Studies, Atlanta, Georgia
Please contact Krista Charen, kcharen@emory.edu or 404-778-8479 for information
We are recruiting individuals in families with Fragile X Syndrome for several ongoing research projects:

The Emory Study of Adult Learning - Now recruiting males 18-50 years of age to look at learning and performance style.

The Emory Study of Learning and Reproduction - Now recruiting females 18 to 75 years of age to look at learning, performance style, and reproductive history. A blood sample may also be required from selected participants.

The Emory Study of Child Learning - Now recruiting children between the ages of 6 and 17 years who do NOT have Fragile X to look at learning and behavior.

The Emory Study of Learning and Movement - For males above the age of 50, this study looks at learning, balance and movement. Some subjects may be selected to have a full neurological exam as well.