TRIS Project Update

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Tracking Rare Incidence Syndromes (TRIS) project update

October 2023

As of October 31, 2023, 594 TRIS baseline surveys (at least two months of age at survey completion, n=1044; 56.9%) and 250 TRIS modified surveys (infants living two months or less, n=279; 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 1761 Follow-up Surveys were completed and submitted (Year 1=413, Year 2=332, Year 3=266, Year 4=210, Year 5=148,
Year 6=108, Year 7=89, Year 8=60, Year 9=45, Year 10=35, Year 11=24, Year 12=16, Year 13=9, Year 14=6). 

A poster was presented in May 2023 at the annual meeting of the American Association of Immunologists related autoinflammatory disease in individuals diagnosed with trisomy 8 mosaicism. TRIS project has collaborated with a researcher with the National Institutes of Health for the past eight years. This is the fourth conference presentation.

The TRIS project continues to work with The E. WE Foundation (a healthcare advocacy organization; https://theewefoundation.org/) to share information and recommendations about the care of individuals with healthcare professionals. The TRIS project presented at The E. WE Foundation’s virtual Leap into Advocacy summit in June 2023.

A new collaboration with The Edward Syndrome Association (ESA; https://edwardssyndrome.org/) has also begun. Initial discussions of common interests has taken place. Data mining related to cardiac concerns in young children with trisomy 18 is underway. Analyses, results, and recommendations are expected in spring 2024.

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.