Advance research towards ReNU treatment options!
We Encourage Participation in Multiple Studies
No single study captures every type of information needed to fully understand ReNU syndrome. By participating in patient registries, natural history studies, health data platforms, biospecimen research, surveys, and other studies, ReNU families can collectively help researchers build a more complete picture of the condition. Together, these data points can improve our understanding of ReNU syndrome, inform meaningful outcomes and biomarkers, support clinical trial readiness, and ultimately help advance therapeutic development.
Different studies answer different questions. Some focus on specific aspects of ReNU syndrome, such as epilepsy and seizures. Some collect retrospective data, looking back at medical history and development, while prospective studies follow participants over time to understand how the condition changes. Having studies across different countries, ages, variants, and populations can also help researchers understand the full spectrum of ReNU syndrome.
Creating a Clinical Research ID (CRID) may also make it possible to link an individual's research data across participating studies and platforms without relying on personally identifiable information. When researchers and platforms support CRID, this can make data more interoperable and may reduce duplicate data collection, helping families contribute more efficiently while allowing researchers to learn from a more connected body of data.
Check out our Research FAQ to learn more.
Research and Treatment Disclaimer
ReNU Syndrome United strongly encourages voluntary participation in patient registries and natural history studies, which can help researchers better understand the symptoms, progression, and impact of ReNU syndrome and support future research and therapeutic development. Participation in any survey, registry, research study, clinical trial, or treatment decision should be based on informed consent (including an understanding of how personal information will be protected), your authorization to your healthcare provider for the use your personal information, and discussed with the participant’s qualified healthcare providers.
Some surveys and/or studies may be qualified for payment by the provider. RSU does not provide the compensation nor do we guarantee payments from any 3rd parties that you may register with or how any payment information you provide to survey, registry, or study providers may be shared with 3rd party payment vendors.
Although RSU is hopeful about ongoing and future research, it does not endorse, recommend, guarantee, or attest to the safety, effectiveness, viability, regulatory prospects for approval, or availability of any investigational therapy or proposed treatment. Treatments may involve known and unknown risks, may not provide benefit, and may ultimately not be proven safe or effective. Information shared by RSU is for educational purposes only and is not intended as medical advice or a substitute for individualized medical care.