Alberta Children’s Hospital

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.