UMDNJ Robert Wood Johnson Medical School will be a go to place to help answer your questions and schedule appointments with our various specialists. Contact me with your suggestions and concerns! We have an extensive list specialists familiar with Rett syndrome at UMDNJ in New Brunswick and Camden. For information about appointments please contact Leslie Greenfield
or call 866-601-0100. To download the complete brochure click here.
Kapila Seshadri, MD, Medical Director
Child Health Institute
89 Plum St., New Brunswick NJ
The Natural History of Rett Syndrome Research Study Clinics are held every August and February until June 2014, in New Brunswick, NJ as well as other dates throughout the year in Chicago IL, Miami FL, Tampa FL, Oakland CA, and at the resesarch centers at:
NJ Location: Child Health Institute, 89 Plum St., New Brunswick, NJ 08901
The purpose of this natural history study is to establish a phenotype-genotype correlation over a broad spectrum of Rett syndrome phenotypes including the longitudinal pattern of progression of clinical features, quality of life, and longevity across this cohort.
Target Enrollment: 1,000 individuals fulfilling consensus clinical criteria for Classic or Variant Rett Syndrome or individuals with MECP2 mutations who do not meet the clinical criteria. All ages will be eligible. Patients must be able to travel to study sites for annual evaluations (for those 6 years or older) or bi-annual evaluation (for those through age 5).
Upcoming clinic is scheduled for Saturday & Sunday, Aug 10-11, 2013 and
February 8-9, 2014 will be the LAST New Jersey study visit!
For information about enrolling in the study in New Jersey, please contact Leslie Greenfield.
(click to enlarge photos)
The Common Meadow Violet, the New Jersey state flower, symbolizes the beauty and fragility of our girls and women with Rett Syndrome and their ability to flourish.