TRIS Project Update

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Tracking Rare Incidence Syndromes (TRIS) project update

April 2017

As of April 30, 2017, 457 TRIS Full (baseline) surveys (at least two months of age at survey completion, n=793 total; 57.6%) and 219 TRIS Modified surveys (infants living two months or less, n=252 total; 87%) were completed.

Follow-up Surveys are sent on the anniversary of initial completion of the Full TRIS Survey. Since February 1, 2008, a total of 845 Follow-up Surveys were completed and submitted (Year 1=268, Year 2=195, Year 3=136, Year 4=96, Year 5=59, Year 6=45, Year 7=28, Year 8=13, Year 9=4, and Year 10=1).

Since January 2017, Dr. Bruns has been developing online modules to share with medical professionals and families. The modules focus on background information, research, and recommendations for daily and medical care for children with trisomy 18 (full), trisomy 13 (full), trisomy 9 mosaic, and trisomy 8 mosaic. Each module includes a Power Point presentation, resource list and glossary. It is anticipated that the trisomy 18 and trisomy 13 modules will be available on the TRIS project website by June 30th. In addition, outreach continues to recruiting new parents to enroll in the project and continuing to respond to parent and caregiver queries via email and Facebook.

Please continue to spread the word and encourage parents, grandparents and guardians to enroll in the project and share information about their child. The TRIS project website is at http://tris.siu.edu and Facebook page at https://www.facebook.com/TRIS.Trisomy.project/. The TRIS project brochure is available for download from the homepage of the TRIS project website located at http://tris.siu.edu/_common/documents/TRIS-Brochure-Nov-2015-2.pdf. Paper copies are also available by request by sending an email message to tris@siu.edu including a mailing address, number of copies and intended audience.

We look forward to hearing from you. Feel free to send an email to tris@siu.edu and/or leave a message on our Facebook page at https://www.facebook.com/TRIS.Trisomy.project/