TRIS Project Update
Tracking Rare Incidence Syndromes (TRIS) project update
As of October 31 2022, 582 TRIS Full (baseline) surveys (at least two months of age at survey completion, n=1025 total; 56.8%) and 248 TRIS Modified surveys (infants living two months or less, n=278 total; 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 1645 Follow-up Surveys were completed and submitted (Year 1=409, Year 2=322, Year 3=256, Year 4=190, Year 5=133, Year 6=99, Year 7=75, Year 8=55, Year 9=41, Year 10=28, Year 11=20, Year 12=10, Year 13=6, Year 14=1).
Work continues on a manuscript on trisomy 18 seizure related data from the TRIS project database (e.g., (age at start, effectiveness of medications). The group is led by a graduate student interested in genetic counseling, her advisor, Dr. Carey, two pediatric neurologists, and TRIS project lead researcher. Data results will inform management considerations for families and medical professionals. Submission for review will take place before the end of the year.
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; https://theewefoundation.org/) to share information about trisomy 18 with healthcare professionals including specialists and practitioners (e.g., social workers, care managers, nurses).
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 https://tris.siu.edu and/or by request by email to email@example.com
We look forward to hearing from you.