TRIS Project Update
Tracking Rare Incidence Syndromes (TRIS) project update
As of October 31, 2017, 484 TRIS Full (baseline) surveys (at least two months of age at survey completion, n=840 total; 57.6%) and 226 TRIS Modified surveys (infants living two months or less, n=259 total; 87.3%) 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 941 Follow-up Surveys were completed and submitted (Year 1=303, Year 2=209, Year 3=150, Year 4=105, Year 5=63, Year 6=47, Year 7=34, Year 8=20, Year 9=7, and Year 10=3).
The online informational modules are complete for trisomy 18 (full), trisomy 13 (full), and trisomy 9 mosaic and are available for download at http://tris.siu.edu/modules/index.php Each module provides background information, research, and recommendations for daily and medical care. Each module includes a Power Point presentation, resource list and glossary. The modules are intended for families, medical professionals and others who provide services and supports to individuals with these conditions (e.g., physical therapist). A module for trisomy 8 mosaic is also planned with data mining beginning soon. Several additional data mining and writing efforts are also underway.
TRIS project continues to respond to parent and caregiver queries via email and Facebook posts. Recent responses to queries have been shared with interested individuals within the United States, Canada and the Netherlands. Outreach to recruit new parents to enroll in the project also continues via the project’s Facebook page and webpage as well as parent-to-parent contact.Please continue to spread the word and encourage parents, grandparents and guardians to enroll in the project and share information about their child. The TRIS project website is at http://tris.siu.edu and Facebook page at https://www.facebook.com/TRIS.Trisomy.project/. The TRIS project brochure is available for download from the homepage of the TRIS project website located at http://tris.siu.edu/_common/documents/TRIS-Brochure-Nov-2015-2.pdf. Paper copies are also available by request by sending an email message to firstname.lastname@example.org including a mailing address, number of copies and intended audience.