TRIS Project Update

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Tracking Rare Incidence Syndromes (TRIS) project update

April 2020

As of April 30, 2020, 545 TRIS Full (baseline) surveys (at least two months of age at survey completion, n=962 total; 56.6%) and 238 TRIS Modified surveys (infants living two months or less, n=267 total; 89.1%) 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 1293 Follow-up Surveys were completed and submitted (Year 1=368, Year 2=285, Year 3=201, Year 4=139, Year 5=94, Year 6=68, Year 7=53, Year 8=37, Year 9=27, Year 10=13, Year 11=6, Year 12=2). 

Deborah Bruns, principal investigator of the TRIS project, has been named to the SOFT USA Medical and Scientific Advisory Board and the SOFT UK Professional Adviser team (announcement located at https://www.soft.org.uk/news/trisomy-researcher-joins-soft-uk-professional-adviser-team).

Dr. Bruns also assisted to update the trisomy 18 entry in the Rare Disease database of the National Organization for Rare Disorders (United States based organization). The information can be found at https://rarediseases.org/rare-diseases/trisomy-18-syndrome/

Collaboration with Martina Biagi, Io Sono project, continues. Ms. Biagi’s documentary of her visit to the United States including the 2019 SOFT Conference in Yspilanti (MI) is nearing completion. In addition, data related to approximately 50 children and adults with trisomy 9 mosaicism is being analyzed with support from Piero Biagi, Results will be compiled and shared in the coming months as well as prepared for publication.

During Trisomy Awareness month in March 2020, information and resources were shared on the TRIS project Facebook page located at https://www.facebook.com/TRIS.Trisomy.project/ . In addition, staff at the Student Center at Southern Illinois University fundraised for the project. The person coordinating the effort shared the email message below and, also, has a son with a rare condition (Atypical Hemolytic Uremic syndrome):

The Student Center allows its employees to wear jeans during breaks and on Fridays when there are no New Student Orientations or Open Houses. We “pay” to be able to wear the jeans. Each month we pick a worthwhile cause to donate the earnings to. For the month of March, we have chosen to donate these funds to your project. I have the funds and I’m ready to deposit them.

There have been continued efforts for more frequent updates to the TRIS project Facebook page at https://www.facebook.com/TRIS.Trisomy.project 

In addition, collection and review of newspaper articles and television interviews focusing on children and adults with rare trisomy conditions is ongoing.

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 support groups and additional trisomy-related resources. Outreach to enroll new participants 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 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 Facebook page.

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. Feel free to send an email to tris@siu.edu and/or leave a message on our Facebook page.