TRIS Project Update

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Tracking Rare Incidence Syndromes (TRIS) project update

October 2021

As of October 31, 2021, 572 TRIS Full (baseline) surveys (at least two months of age at survey completion, n=1017 total; 56.2%) and 246 TRIS Modified surveys (infants living two months or less, n=278 total; 88.5%) were completed.

Follow-up Surveys are sent on the anniversary of initial completion of the Full TRIS Survey. Since February 1, 2008, a total of 1520 Follow-up Surveys were completed and submitted (Year 1=397, Year 2=312, Year 3=242, Year 4=172, Year 5=115, Year 6=88, Year 7=63, Year 8=52, Year 9=33, Year 10=26, Year 11=11, Year 12=8, Year 13=1). 

The TRIS project participated in the virtual SOFT USA and SOFT UK conferences (July and September 2021, respectively). Information about the project was shared as well as responding to questions from participating parents. Participation was also used for recruiting participants for the project.

Discussions are underway to develop a case study related to novel respiratory interventions for a child with trisomy 18 with her pediatric pulmonologist as well as a review of TRIS project related seizure data for additional management considerations. This project will be with Dr. Carey, a genetic counselor and a graduate student.

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.