It’s time to advance research towards diagnosis & treatment options!
Participate in ReNU patient registries and research opportunities - organized systems to collect and store standardized data about RNU4-2 / ReNU Syndrome individuals, enabling researchers to study treatment options, disease progression, and other factors related to healthcare over time.
IMPORTANT: If you are enrolling a ReNU patient in research, from ANY country, please Create a Clinical Research ID (CRID)! This is crucial to using the research data collected across platforms and research programs. Example for CRID registration: Disease Name: ReNU Syndrome | Gene: RNU4-2 | Variant: n.64_65insT (or your variant)
Once you create a CRID, it’s yours to hold on to! We encourage you to share it with any clinical research studies that you enroll your ReNU child in, as they become available.
When you share it with a research study, it will be used to anonymize your ReNU child, so that researchers may learn from the data you share: they associate your child with a clinical research ID instead of getting names or personally identifiable information about them. If you enroll in multiple research studies, the hope is that by cross-referencing your CRID, you may not need to repeatedly answer the same questions you’ve already answered in previous studies. Right now we have https://rare-x.org/rnu4-2/ the Rare-X registry and if you enroll you can add your CRID there and start to take surveys about your child. This registry will help inform our community about ReNU syndrome, how it progresses over time, and more about the full effects throughout the body.
As an organization, we are encouraging lots of research into ReNU so that it can fuel the development of potential treatment options.
Join the Rare-X registry
Rare-X is our primary registry for collecting data about RNU4-2 / ReNU syndrome and ALL are welcome to participate. Treatment options may require that we have robust data that is continually updated.
Register today: https://rare-x.org/RNU4-2
Contact RareXsupport@globalgenes.com for technical issues or questions about the platform.
Help AI Recognize ReNU
GestaltMatcher uses advanced Al technology to analyze medical images and identify facial features that may indicate and accelerate the diagnosis of rare genetic disorders.
Join the GenIDA registry
Genetic of Intellectual Disability
and Autism Spectrum Disorders
Join the GenIDA registry to accelerate knowledge about genetic forms of intellectual disability, autism and epilepsy.
