Trisomy 13, Trisomy 18 and related disorders
~ The TRIS Project ~
Tracking Rare Incidence Syndromes
The Tracking Rare Incidence Syndromes (TRIS) Project. This is a replay of a webinar aired on February 27, 2013. Dr. Debbie Bruns discusses the TRIS Project: What it is, why it is and how much your input matters!
The TRIS project provides a means to change perceptions about children with rare trisomy conditions. Through data from TRIS Surveys, new information is available about long-term survival, positive surgical outcomes and achievement of developmental milestones such as using gestures and vocalizations to communicate, walking (with or without assistance) and interacting with family members. A combined total of 860 surveys representing children and adults with rare incidence conditions such as trisomy 18, trisomy 13 and trisomy 9 mosaic were completed as of 10/31/16. 58.3% of children were at least 2 months of age or greater. A total of 1007 children and adults are enrolled in the project; many are SOFT members. Your participation is welcomed and encouraged. Contact Debbie Bruns, Ph.D., Southern Illinois University, Carbondale, IL at firstname.lastname@example.org or go to the project enrollment page located at http://tris.siu.edu/survey/form/PreEnroll.php
Information is also shared via the TRIS project brochure. You can send an email to email@example.com or “Like” the Facebook page torequest copies: https://www.facebook.com/TRIS.Trisomy.project). You can also access the brochure directly from the project website: Here is a direct link to the brochure.
Recently, Debbie Bruns, TRIS project’s lead researcher and an Associate Professor at Southern Illinois University Carbondale, wrote several blog entries for the Global Genes project. The links are below. The Global Genes Project is one of the leading rare and genetic disease patient advocacy organizations in the world. The non-profit organization is led by Team R.A.R.E. and promotes the needs of the rare and genetic disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon™. (http://globalgenes.org/who-we-are-2/).
Please follow this link to the TRIS project enrollment form so you can share information about your child that will be used to help change perceptions about rare trisomy conditions. Your participation matters!