|IRSF NATURAL HISTORY FAMILY CLINICS, FEBRUARY & AUGUST|
IRSF Natural History of Rett Syndrome Clinic, LAST NJ site visit date:
Saturday and Sunday, February 8 - 9, 2014
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.
NOTE LOCATION FOR THIS SPECIAL LAST VISIT!
The Heldrich Hotel, 10 Livinston Ave., New Brunswick NJ www.TheHedrich.com
Join us for a special thank you to these amazing teams on Sat. Feb 8, 2014. More details to follow.
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).
If you would like to participate, please visit http://www.rettsyndrome.org/research/overview/current-studies.html or contact me for more information.
For photos of the clinic http://saydahstudios.smugmug.com/Ret