TRIS Project Update

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Tracking Rare Incidence Syndromes (TRIS) project update

October 2020

As of October 31, 2020, 551 TRIS Full (baseline) surveys (at least two months of age at survey completion, n=982 total; 56.1%) and 240 TRIS Modified surveys (infants living two months or less, n=268 total; 89.6%) 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 1391 Follow-up Surveys were completed and submitted (Year 1=384, Year 2=300, Year 3=220, Year 4=154, Year 5=104, Year 6=73, Year 7=58, Year 8=40, Year 9=29, Year 10=18, Year 11=8, Year 12=2, Year 13=1).

Collaboration with Martina Biagi continues. Ms. Biagi’s documentary, Io Sono, has been accepted at multiple film festivals. A Facebook Live/ZOOM event is scheduled on November 15th to provide details on the documentary and its distribution.

There have been continued efforts for updates to the TRIS project Facebook page at https://www.facebook.com/TRIS.Trisomy.project There have been issues accessing the page after Facebook transitioned to its new design. At this time, new posts are shared but the messaging function is not operational. If there are questions about enrollment, child specific concerns and the like, please send them directly to dabruns@siu.edu

Collection and review of newspaper articles and television interviews focusing on children and adults with rare trisomy conditions is ongoing. It is hoped that many of these materials will be scanned and available for viewing and downloading from the TRIS project website in the new year.

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 appropriate as well as links to trisomy-related resources. Outreach to enroll new participants in the project also continues via the project’s Facebook page, project’s website as well as parent-to-parent contact. 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 the page and the project’s website at https://tris.siu.edu and on Facebook.

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 postal mailing address, number of copies and intended audience).

We look forward to hearing from you.