IRSF Calendar

If you are hosting an event to support IRSF’s mission, please be sure we know about it! If you have questions about hosting an event, want to collect donations online or would like to add your event to our calendar, contact IRSF at events@rettsyndrome.org or (800) 818-7388.

Click here to download the 2014 Event List to print off and share.

Events Calendar
Calendar View List View Printer-Friendly Version Print View Export as iCalendar
Event Details
NHS - Chicago, IL

Sat, 13 Apr, 2013 8:00 AM - 5:00 PM

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.

Location:Various (See list below). A child is enrolled and seen at one specific study site. Assessments are scheduled privately in Alabama, Massachusetts, South Carolina, and Texas. Individual assessments are scheduled into specialized clinic weekends sponsored by IRSF (see below for dates) in California, Florida, Illinois, and New Jersey.

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).

The data collection sites include:

  • Birmingham, AL
  • Oakland, CA – travel site
  • Tampa/Miami (alternating), FL - travel site
  • Chicago, IL - travel site
  • Boston, MA
  • New Brunswick, NJ – travel site
  • Greenwood, SC
  • Houston, TX

How to Participate:In order to participate in a study, you must personally contact the study coordinator of any of the participating institutions by phone or by e-mail. Please use the information below to inquire about participation. If you wish to enroll at one of the travel sites (CA, FL, IL, or NJ) please contact Jane Lane, lead research coordinator, at the University of Alabama for participation information.

Site Coordinators Contact Information:

The Blue Bird Circle Rett Center, Texas Children's Hospital/Baylor College of Medicine Coordinator: Judy Barrish, RN, BSN jobarris@texaschildrenshospital.org Ph: 832-822-7388 or 888-430-7388

University of Alabama at Birmingham, Birmingham, AL Coordinator: Jane Lane, RN, BSN jlane@uab.edu Ph: 205-934-1130

Greenwood Genetic Center, Greenwood, SC Coordinator: Fran Annese, LMSW fran@ggc.org Ph: 864-941-8100

Boston Children's Hospital Rett Center Boston, MA Coordinator: Kate Barnes, BSc Email: Katherine.Barnes@childrens.harvard.edu Ph: 617-355-5230

Location: Chicago, IL
Calendar: Special Events - Meetings/Symposiums
  Add this single event to my Windows Live(TM) Calendar  Add this single event to my Google(TM) Calendar  Add this single event to my Yahoo!(R) Calendar