The Congenital Rubella Syndrome (CRS) Community has partnered with TREND Community to find answers for CRS survivors. This underserved group hopes that an analysis of years of discussions shared through Facebook and email, along with patient & caregiver contributed stories, will provide them with clear data to inform: the healthcare system to better recognize, research, and alleviate the symptoms of this disease; government to gain recognition of the disease as a disability and lifelong problem; and survivors of the syndrome to give a clearer picture of the disease.
Through an analysis* of real world discussions and patient & caregiver contributed stories, TREND Community’s Voice of the Patient Report will provide insight into the disease burden and progression of CRS and inform the medical and research communities.
TREND Community also aims to discover an unmet need of the CRS Community and organize a targeted Health Initiative to empower its patients & caregivers to explore a solution that will ease the burden of one or more of their daily challenges.
TREND Health Initiatives are observational or interventional pilot projects intended to provide immediate benefit to the community while generating hypotheses for future research. All data are shared back with the community upon completion.
ABOUT TREND Community
TREND Community is a digital health company with a mission to accelerate the search for treatments and cures while improving the quality of life for individuals living with rare disease. Our flagship application is an invitation-only network of consented patients and caregivers living with rare disease who are engaged in community powered science.
*Using natural language processing and machine learning techniques, TREND Community captures the patient voice from their stories, discussions and journals.
ABOUT CONGENITAL RUBELLA SYNDROME
Rubella is an infection caused by a virus, which when contracted by a pregnant woman leads to Congenital Rubella Syndrome (CRS). CRS is an important cause of severe birth defects with multiple symptoms including but not limited to: swallowing issues, physical limitations, deafness, blindness, chronic pain and neurological issues (intellectual impairment, learning difficulties, and neurological decline all of which may worsen with age). The World Health Organization recommends rubella vaccination to lower the number of people born with CRS.