TRIS Project Update

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Tracking Rare Incidence Syndromes (TRIS) project update

April 2018


As of April 30, 2018, 498 TRIS Full (baseline) surveys (at least two months of
age at survey completion, n=862 total; 57.8%) and 229 TRIS Modified surveys
(infants living two months or less, n=261 total; 87.7%) 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 991 Follow-up Surveys were
completed and submitted (Year 1=314, Year 2=217, Year 3=158, Year 4=108,
Year 5=69, Year 6=50, Year 7=38, Year 8=24, Year 9=10, Year 10=3, Year
11=1).


Several years ago, the National Organization for Rare Disorders (NORD)
reached out to the TRIS project for assistance in updating informational
brochures related to chromosome 9 disorders. Recently, NORD requested an
update for individuals with trisomy 9p (multiple variants) as well as trisomy 9
mosaic. The former is now available at https://rarediseases.org/rarediseases/
chromosome-9-trisomy-9p-multiple-variants/ and the latter will be
uploaded soon.


The 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 South Africa.
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.
Medical professionals also reach out for information on patients. TRIS project,
publications, informational modules and case studies are shared as
appropriate.


Please continue to spread the word and encourage parents, grandparents and
guardians to enroll in the project and share information about their
(grand)child.


The TRIS project website is located at http://tris.siu.edu and Facebook page
at https://www.facebook.com/TRIS.Trisomy.project/. In addition, the TRIS
project brochure is available for download from
https://tris.siu.edu/_common/documents/TRIS-Brochure-Nov-2015-2.pdf.


Paper copies are also 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/