TRIS Project Update

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Tracking Rare Incidence Syndromes (TRIS) project update

April 2022

As of April 30 2022, 579 TRIS Full (baseline) surveys (at least two months of age at survey completion, n=1024 total; 56.5.x%) and 248 TRIS Modified surveys (infants living two months or less, n=278 total [unchanged]; 89.2%) were completed.

Follow-up surveys are sent on the anniversary of initial completion of the baseline Survey. Since February 1, 2008, a total of 1598 Follow-up Surveys were completed and submitted (Year 1=402, Year 2=318, Year 3=252, Year 4=187, Year 5=125, Year 6=94, Year 7=68, Year 8=54, Year 9=38, Year 10=28, Year 11=18, Year 12=9, Year 13=5). 

A brief video was prepared for a conference in Italy (May 2022) focusing on children and adults diagnosed with trisomy 9 mosaicism. The video highlights how the TRIS project began, families participating in the project and some t9m data results.

Work continues on trisomy 18 related seizure data from the TRIS project database. A number of analyses have been completed by a graduate student interested in genetics and reviewed by Dr. Carey, two pediatric neurologists, and a genetic counselor. Data results will inform management considerations for families and medical professionals. Dissemination of results will begin in fall 2022.  

Discussion is underway to prepare a case study related to novel respiratory interventions for a child with trisomy 18. The child’s pediatric pulmonologist is providing information (case notes etc.). Upon completion, the case study will be submitted for publication in a pulmonology focused medical journal.

The TRIS project continues to work with the E. WE Foundation (a healthcare advocacy organization; and KAL Research Initiatives ( to share information about trisomy 18 with  healthcare professionals including specialists and practitioners (e.g., social workers, care managers, nurses). Discussion is underway to offer materials for CEUs on trisomy 18 related topics such as cardiac interventions Wilms tumor, onset of seizures, and nutrition and feeding.

The TRIS project continues to respond to parent and caregiver 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 and/or by request by email to

We look forward to hearing from you.