TRIS Project Update

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Tracking Rare Incidence Syndromes (TRIS) project update

October 2018

As of October 31, 2018, 513 TRIS Full (baseline) surveys (at least two months of age at survey completion, n=897 total; 57.2%) and 231 TRIS Modified surveys (infants living two months or less, n=263 total; 87.8%) 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 1091 Follow-up Surveys were completed and submitted (Year 1=337, Year 2=242, Year 3=170, Year 4=118, Year 5=75, Year 6=57, Year 7=43, Year 8=27, Year 9=15, Year 10=5, Year 11=2).

The TRIS project welcomed an undergraduate research assistant in September. Work is moving forward on data analyses for a large sample of children diagnosed with trisomy 9 mosaicism (n=44). Data on over 30 children with trisomy 8 mosaicism will also be analyzed and prepared for publication.

A new project focusing on trisomy 9 mosaicism has started In the past few months. A family member and multi-media producer from Italy has expressed interest in working with TRIS project to raise awareness in her home country and beyond. Plans are underway for a visit to include attendance at the 2019 SOFT Conference in Ann Arbor (Michigan).

The TRIS project continues to respond to parent and caregiver queries via email and Facebook posts. Recent responses to queries have been shared with interested individuals within the United States, Canada and South Africa. Outreach to recruit new parents to enroll in the project also continues via the project’s Facebook page and webpage as well as parent-to-parent contact. Medical professionals also reach out for information on patients. TRIS project, publications, informational modules and case studies are shared as well. Please continue to spread the word and encourage parents, grandparents and guardians to enroll in the project.

The TRIS project website is located at https://tris.siu.edu and Facebook page at https://www.facebook.com/TRIS.Trisomy.project/. In addition, the TRIS project brochure is available online and paper copies are available by request (please send 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/ .