TRIS Project Update
Tracking Rare Incidence Syndromes (TRIS) project update
As of April 30, 2019, 524 TRIS Full (baseline) surveys (at least two months of age at survey completion, n=911 total; 57.5%) and 235 TRIS Modified surveys (infants living two months or less, n=266 total; 88.3%) 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 1159 Follow-up Surveys were completed and submitted (Year 1=349, Year 2=258, Year 3=181, Year 4=128, Year 5=78, Year 6=60, Year 7=43, Year 8=33, Year 9=19, Year 10=8, Year 11=2).
The TRIS project welcomed a second undergraduate research assistant in January. The two have been involved in a number of projects and will attend the SOFT Conference in Ann Arbor, Michigan in July. Work also continues with our colleague in Italy. In addition, an angel mom who utilized TRIS project data in her doctoral dissertation has reached out to continue analyzing data and prepare the results for dissemination.
In the past few months, data analyses have been completed for 45 children diagnosed with trisomy 9 mosaicism. Data on 31 children with trisomy 8 mosaicism has also been analyzed and a brief questionnaire on t8m specific physical characteristics and medical conditions has been developed and shared with parents. Both sets of results will be prepared for publication. Efforts to update three of the TRIS project case studies published in 2014 are also underway. It is important to note that all but one of the 12 children are still alive and thriving. There are so many examples that fly in the face of the often used phrase “Incompatible with life” to describe these children. In fact, one of the children will graduate from 8th grade next month!
TRIS project has been collecting newspaper articles and television interviews focusing on children and adults with rare trisomy conditions. At present, the materials are being cross-referenced with the TRIS project database. This general media focused effort will be analyzed and prepared to share 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 in the United States, Canada, England, Italy, Russia and Slovenia. Several inquiries also came from undergraduate and graduate level university students as well as a few medical professionals affiliated with universities and/or medical centers asking about patients and/or TRIS project data. 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 firstname.lastname@example.org including a mailing address, number of copies and intended audience).
We look forward to hearing from you. Feel free to send an email to email@example.com and/or leave a message on our Facebook page at https://www.facebook.com/TRIS.Trisomy.project/