TRIS Project Update

Tracking Rare Incidence Syndromes (TRIS) project update

October 2025

As of October 31, 2025, 614 TRIS baseline surveys (at least two months of age at
survey completion, n=1080; 56.9%) and 254 TRIS modified surveys (infants living two
months or less, n=281; 90.4%) were completed.

Follow-up surveys are sent on the anniversary of initial completion of the baseline
Survey. Since February 1, 2008, a total of 1990 Follow-up Surveys were completed
(Year 1=425, Year 2=345, Year 3=288, Year 4=228, Year 5=177,
Year 6=139, Year 7=105, Year 8=83, Year 9=63, Year 10=41, Year 11=33, Year 12=27,
Year 13=16, Year 14=10, Year 15=7, Year 16=3).

The TRIS project is excited to be a part of the Trisomy Collaborative
(https://www.seattlechildrens.org/research/centers-programs/bioethics/our-labs/wilfondlab/
research-projects/#trisomy). The group held its initial meeting in June 2025 in
Chicago. The group is focused on changing the narrative relating to trisomy 18 and
trisomy 13. One part of their efforts is funding for research “…to facilitate professional
organizations’, health systems’ and clinicians’ capacity to support parents’ experience
with trisomy 13 and 18”. The TRIS project is working with two collaborators and their
respective research coordinators to examine family experiences through focus groups
and a revised TRIS project baseline survey. 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. In
addition, the TRIS project continues to work with rare trisomy related advocacy groups
(https://theewefoundation.org/, https://theewefoundation.org/coalition/).

Data is being examined 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.
In addition, information about cause of death is being studied as parents often report
their child’s diagnosis on the death certificate. This stands in contrast to medical causes
such as respiratory failure or sepsis.

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.

The TRIS project continues to respond to queries via email and Facebook posts
including several 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.