TRIS Project Update

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Tracking Rare Incidence Syndromes (TRIS) project update

October 2024

As of October 31, 2024, 604 TRIS baseline surveys (at least two months of age at survey completion, n=1059; 57%) and 251 TRIS modified surveys (infants living two months or less, n=280 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 1869 Follow-up Surveys were completed and submitted (Year 1=421, Year 2=337, Year 3=278, Year 4=220, Year 5=161, Year 6=125, Year 7=97, Year 8=73, Year 9=50, Year 10=36, Year 11=,31 Year 12=18, Year 13=11, Year 14=8, Year 15=3). 

Through support from Dr. Carey, Dr. Bruns has been asked to speak at a medical gathering in Matsumoto, Japan in early November. The visit will also include meeting with Japanese families with a member with trisomy 18 or trisomy 13.

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 continuing to work with the Beacon Fund to secure funding for several project activities. Conversations are also underway to identify a collaborator to support activities and management of the project in the short and long term.

The TRIS project continues to respond to queries via email and Facebook posts including several international requests for information and resources.

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.