TRIS Project Update

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Tracking Rare Incidence Syndromes (TRIS) project update

April 2025

As of April 30, 2025, 609 TRIS baseline surveys (at least two months of age at survey completion, n=1073; 56.8%) and 252 TRIS modified surveys (infants living two months or less, n=281; 89.7%) were completed.

Follow-up surveys are sent on the anniversary of initial completion of the baseline Survey. Since February 1, 2008, a total of 1943 Follow-up Surveys were completed and submitted (Year 1=423, Year 2=341, Year 3=286, Year 4=226, Year 5=173, Year 6=133, Year 7=102, Year 8=78, Year 9=56, Year 10=38, Year 11=33, Year 12=23, Year 13=14, Year 14=10, Year 15=5, Year 16=2). 

In November, Dr. Bruns presented at the Pediatric Genetics Society of Japan in Matsumoto in Nagano Prefecture. Her presentation was titled: “Changing the narrative on trisomy 18 and 13 through an international database.” The audience included neonatal specialists from Japan, Taiwan and Singapore. The visit also included meeting with residents and medical students as well as Japanese families with a member with trisomy 18 or trisomy 13. The topic for the group was “An overview of the TRIS project: Focus on parent generated data”. Many thanks to Tomohiko Nakamura for all the support, and assistance for arrangements and welcoming TRIS project to Japan.

The TRIS project continues to work with rare trisomy related advocacy groups including The E. WE Foundation (https://theewefoundation.org/) and the Trisomy 18 Coalition (https://theewefoundation.org/coalition/). In addition, there are ongoing efforts with the Beacon Fund to secure funding for updating TRIS project surveys and dissemination opportunities. Two collaborators and their respective research coordinators will facilitate management of the project in the short and long term. This will include focus groups and a revised baseline survey to continue to gather and analyze information for dissemination to parents, caregivers and a range of professionals.

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.