TRIS Project Update

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Tracking Rare Incidence Syndromes (TRIS) project update

October 2019

As of October 31, 2019, 538 TRIS Full (baseline) surveys (at least two months of age at survey completion, n=942 total; 57.1%) and 238 TRIS Modified surveys (infants living two months or less, n=267 total; 89.1%) were completed. Thanks to everyone for completing their survey.

Follow-up Surveys are sent on the anniversary of initial completion of the Full TRIS Survey. Since February 1, 2008, a total of 1240 Follow-up Surveys were completed and submitted (Year 1=359, Year 2=277, Year 3=192, Year 4=134, Year 5=86, Year 6=67, Year 7=50, Year 8=36, Year 9=23, Year 10=10, Year 11=4, Year 12=2). 

The TRIS project participated in the SOFT Conference in Ann Arbor, Michigan in July by providing a workshop on project activities and informally meeting with parents. In addition, our colleague from Italy traveled with us and interviewed families for a documentary. In addition, there was planning with an angel mom who utilized TRIS project data in her doctoral dissertation and is again working with project staff to analyze developmental data and prepare the results for dissemination. Finally, there was also a consultation with Dr. Carey to discuss current and future directions for the TRIS project.   

In the past few months, three of the TRIS project case studies published in 2014 have been updated and uploaded to the website at https://tris.siu.edu/case-studies/ and work has begun on two more. There has also been an effort for more frequent updates to the TRIS project Facebook page at https://www.facebook.com/TRIS.Trisomy.project 
In addition, review and analyses continue on newspaper articles and television interviews focusing on children and adults with rare trisomy conditions (cross-referencing with the TRIS project database). Results will be shared with project families, medical professionals, therapists and other interested audiences via the project’s website.

The TRIS project continues to respond to parent and caregiver queries via email and Facebook posts. Recent queries have been from interested individuals. TRIS project, publications, informational modules and case studies are shared as appropriate as well as links to support groups. Outreach to recruit new parents to enroll in the project also continues via the project’s Facebook page, website as well as parent-to-parent contact. Please continue to spread the word and encourage parents, grandparents and guardians to enroll in the project. 

The TRIS project website is located at https://tris.siu.edu and Facebook page at https://www.facebook.com/TRIS.Trisomy.project/. In addition, the TRIS project brochure is available online and paper copies are available by request (please send an email message to tris@siu.edu including a mailing address, number of copies and intended audience). 

We look forward to hearing from you. Feel free to send an email to tris@siu.edu and/or leave a message on our Facebook page at https://www.facebook.com/TRIS.Trisomy.project/