Research on congenital rubella syndrome (CRS) is getting a second chance! A company called Trend Community recently signed an agreement with administrators of a private CRS Facebook group to begin collaboration.
CRS occurs when a pregnant woman contracts rubella in her first trimester. The virus can infect the developing fetus, causing the baby to be born deaf, blind, with cerebral palsy and/or a host of health issues. A worldwide epidemic in the early 1960s resulted in the birth of approximately 20,000 affected babies in the U.S. Research showed that, as these babies grew into adulthood, additional health issues, such as unexpectedly high rates of glaucoma and diabetes, emerged. Due to the dwindling size of this already small community, research dollars have dried up. Meanwhile, many in the CRS community live with serious health issues that they believe to be “CRS related.” Data to support this would assist those living with CRS to share this information with their health providers so that a proper course of treatment and support can be established.
Trend Community works with low incidence/rare disease communities to identify “trends” in health issues.
They accomplish this by analyzing – with permission – health related posts on private Facebook groups or on Trend’s own social media platform. The Trend platform is HIPAA compliant and allows participants to create individual profiles and journals that include health information, medications, symptoms, etc. Using special analysis software, “trends” emerge that are then analyzed and compiled into a report by Trend’s scientist. This report can be shared with doctors, researchers, pharmaceutical companies, etc. There is no charge to the CRS community for this service.
Thanks to the administrators of the private CRS Facebook group, there is a vibrant community of individuals with CRS who are ready to jump in and participate in this effort. We welcome and need participation from any and all individuals living with CRS or their guardians, worldwide. Please read the press release for more information.
To join the Trend Community for CRS, go to: https://trend.community/, scroll all the way down to the bottom of the page and submit your information in to “Request an Invitation” to join. You will be sent an email (check your spam folder too!) with further information.
If you have questions, you may contact Nancy O’Donnell through NFADB: nfadbinfo@gmail.com
Your donation will help us inform, empower and connect families of individuals who are deaf-blind. Thank you!
Interested in becoming a member of the National Family Association for Deaf-Blind?
NFADB
PO Box 1667
Sands Point, NY 11050
Phone: 800.255.0411
Fax: 516.883.9060
