TRIS Project Update

Tracking Rare Incidence Syndromes (TRIS) project update

April 2026

As of April 30, 2026 616 TRIS baseline surveys (at least two months of age at survey completion, n=1084; 56.8%) and 255 TRIS modified surveys (infants living two months or less, n=281; 90.7%) were completed.

Follow-up surveys are sent on the anniversary of initial completion of the baseline Survey. Since February 1, 2008, a total of 2044 Follow-up Surveys were completed (Year 1=427, Year 2=347, Year 3=291, Year 4=232, Year 5=186, Year 6=146, Year 7=109, Year 8=88, Year 9=68, Year 10=44, Year 11=34, Year 12=29, Year 13=17, Year 14=11, Year 15=9, Year 16=5, Year 17=1). 

The TRIS project participated in the annual meeting of the Trisomy Collaborative (https://www.seattlechildrens.org/research/centers-programs/bioethics/our-labs/wilfond-lab/research-projects/#trisomy). The meeting was in Chicago in March. The effort is focused on changing the narrative related to trisomy 18 and trisomy 13 including research “…to facilitate professional organizations’, health systems’ and clinicians’ capacity to support parents’ experience with trisomy 13 and 18”. Along with two collaborators (Cincinnati Children’s Hospital, Massachusetts General Hospital), the TRIS project is examining family experiences through focus groups and a survey based on the TRIS project’s baseline instrument. At present, recruitment is underway and approximately 50 surveys have been completed along with several focus groups.  Resulting data will be analyzed using quantitative and qualitative methodologies and disseminated via the Trisomy Collaborative and directly to parents, caregivers and a range of professionals.

The TRIS project is continuing to be a part of a collaboration focusing on trisomy 9 mosaicism with 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 prepared for dissemination.

Data is being analyzed for children and adults diagnosed with trisomy 18 mosaicism relating to medical, therapy and educational needs. To date, most research has been case studies or small “n” studies. There are over 20 cases in the TRIS project database. A manuscript is ready for submission for publication.

The TRIS project will be part of the upcoming 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.