TRIS Project Update

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Tracking Rare Incidence Syndromes (TRIS) project update

April 2024

As of April 30, 2024, 597 TRIS baseline surveys (at least two months of age at survey completion, n=1050; 56.9%) and 250 TRIS modified surveys (infants living two months or less, n=279 check; 89.6%) were completed.

Follow-up surveys are sent on the anniversary of initial completion of the baseline Survey. Since February 1, 2008, a total of 1825 Follow-up Surveys were completed and submitted (Year 1=417, Year 2=337, Year 3=275, Year 4=216, Year 5=155, Year 6=120, Year 7=93, Year 8=65, Year 9=46, Year 10=36, Year 11=29, Year 12=16, Year 13=11, Year 14=7, Year 15=2). 

In March, the TRIS project co-presented a poster at the American College of Medical Genetics and Genomics conference in Toronto, Canada entitled Reframing the Narrative on Incompatible With Life in Trisomy 18 & 13 with Dr. John Carey. The poster received a Top Ten Ranked distinction. (Send an email message to dabruns@siu.edu to request a copy.)

The TRIS project continues to work with The E. WE Foundation (a healthcare advocacy organization; https://theewefoundation.org/) and The Edward Syndrome Association (ESA; https://edwardssyndrome.org/). The principal investigator of the TRIS project is also working with the Beacon Fund in the hopes of securing funding for several new project activities.

The TRIS project continues to respond to queries via email and Facebook posts. TRIS project publications, informational modules and case studies are shared as well as links to additional rare trisomy-related resources. Outreach to enroll new participants in the project also continues via project’s website, rare trisomy related Facebook groups as well as parent-to-parent contact. Rare trisomy related newspaper articles and other media representation continue to be collected as well.

Please continue to spread the word and encourage others to enroll in the project as well as have medical professionals, therapists and other interested audiences follow updates and access materials on the project’s website at https://tris.siu.edu and/or by request by email to tris@siu.edu

We look forward to hearing from you.