Rett Syndrome Growth Analysis. Alan Percy, MD

I am pleased to announce that the growth analysis emanating from the Natural History Study has been accepted for publication in the journal, Neurology. It should appear in paper form later this year, but will be published online in the near future. The full citation will include the following: Tarquinio D, Motil K, Hou W, Lee H, Glaze DG, Skinner SA, Neul JL, Annese F, McNair L, Barrish JO, Geerts SP, Lane JB, Percy AK. Growth Failure in Rett Syndrome: Specific Growth References. Neurology in press, 2012.

This is important work that resulted in the first-ever Rett syndrome-specific female growth charts as well as an unprecedented understanding of growth patterns in Rett syndrome. The new growth charts are now available to IRSF for dissemination and adoption by the medical community. Sufficient copies should be available at the World Congress in New Orleans for all attendees. This work could not have been accomplished without the considerable efforts and financial resources of many, including the NIH Office of Rare Diseases Research, the Eunice Kennedy Shriver National Institute of Child Health and Human Development, and the support IRSF (and its predecessor IRSA) and local organizers of the weekend travel clinics. It is noteworthy that approximately 40% of the participants in our Natural History Study are seen in these weekend travel clinics. We encourage you to share the charts with your pediatrician or health care provider. We very much appreciate the support of IRSF and particularly the many girls and families.