TRIS Project Update

Tracking Rare Incidence Syndromes (TRIS) project update

October 2026

As of October 31, 2026, 616 TRIS baseline surveys (at least two months of age at survey completion, n=1084; 56.8%) and 256 TRIS modified surveys (infants living two months or less, n=282; 90.8%) were completed.

Follow-up surveys are sent on the anniversary of initial completion of the baseline Survey. Since February 1, 2008, a total of 2050 Follow-up Surveys were completed (Year 1=428, Year 2=348, Year 3=293, Year 4=232, Year 5=186, Year 6=147,
Year 7=109, Year 8=88, Year 9=68, Year 10=44, Year 11=34, Year 12=30, Year 13=17, Year 14=11, Year 15=9, Year 16=5, Year 17=1). 

Continued collaboration with Cincinnati Children's Hospital and Massachusetts General Hospital has focused on family experiences through focus groups and a parent completed survey. Both are based on items from the TRIS project's baseline instrument. Data is being analyzed using quantitative and qualitative methodologies and prepared for dissemination. A description of the scoping review that was utilized to prepare the survey has been submitted for publication.

The TRIS project is also continuing to collaborate on a project focusing on trisomy 9 mosaicism with a physician at Lurie Hospital (Chicago, IL). Data is being reviewed for development of care and management guidelines. Additional information from parents and caregivers is being collected and recruiting new families to participate.

Data from 23 children with trisomy 18 mosaicism relating to medical, therapy and educational needs has been submitted for publication with the American Journal of Medical Genetics Part A. To date, most research has been case studies or small “n” studies.

The TRIS project participated in SOFT USA (July 2026) and UK (May 2026) meetings.

There are ongoing efforts to share TRIS project publications, informational modules, and case studies as well as links to additional rare trisomy-related resources. Outreach to enroll new participants in the project also continues via the project's website, rare trisomy-related Facebook groups and other parent and professional contacts.

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

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.