Citizen Health
Your medical records can help move ReNU research forward! Interest in ReNU Syndrome from pharmaceutical and biotechnology companies is growing. This momentum is incredibly encouraging, but advancing from interest to well-designed studies and potential treatments requires strong, organized patient data. We are asking ReNU families worldwide to help build that foundation by creating your CRID then joining Citizen Health.
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Regular registration: https://citizen.health/renu
Premium* Ari beta registration: http://www.citizen.health/join/renu-syndrome
We have 25 Premium slots open, 1st come 1st served, free through end of year if you sign up by August 31, then you may continue with a no cost option, or upgrade to premium at a monthly fee. (If you already joined as a regular user but want to try it, use the new premium link and connect it to your existing account).
See Ari AI in action: https://vimeo.com/1195764901 - Ari is currently US focused in beta, but international expansion is on the roadmap - stay tuned for when that becomes available!
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ReNU Syndrome United has partnered with Citizen Health to help families securely bring medical records together in one private digital profile.
Citizen Health can help you:
Gather and organize medical records from multiple healthcare providers
By consolidating and sharing your health information, you have the power to seek additional treatment options, to find potential clinical trials, and to share your information for research
Ask questions based on your or your loved one’s medical records
Prepare for appointments and summarize medical history
Identify information and potential opportunities to discuss with your care team
Contribute de-identified information to research, if you choose
With your consent, information from real-world medical experiences can help researchers better understand ReNU Syndrome, identify patterns and support research that could contribute to future treatments. You could contribute to critical natural history studies, enabling researchers to better understand ReNU progression, uncover patterns, and accelerate progress toward breakthroughs.
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Online, with no research-site visits required
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ReNU Syndrome was only discovered in 2024. Researchers are still developing a complete picture of how the condition presents and changes across different ages and stages of life. This is called the condition’s natural history. The stronger and more representative our natural history data becomes, the better prepared the ReNU community may be for future studies and clinical trials. Natural history data can help researchers:
Understand the expected course of ReNU Syndrome without treatment
Identify which symptoms and outcomes are most meaningful to measure
Select appropriate clinical-trial endpoints
Determine whether a potential treatment is making a meaningful difference
Better distinguish treatment effects from normal variation in the condition
In certain circumstances, support an external comparison group when a conventional control group may not be feasible
It helps answer things like: what should we measure to prove a drug works?What's the expected course of the disorder without treatment, so we can tell if a drug changed it?
For clinical trials where you can't randomize against a placebo, natural history data may become the substitute comparator: it's how you prove patients who got the drug did better than patients would have done without it.
It is very likely we will need this data to prove a treatment is actually working.
We should not wait until a potential treatment is ready for testing to begin building this foundation. The data is needed now.
Joining Citizen Health does not enroll you in a clinical trial or guarantee access to a trial or treatment.
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ReNU families; available features may vary by country
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You may join Citizen Health’s core offering at no cost.
Upgrading to Premium may incur monthly fees.
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There may be opportunities for compensation if your data is selected for a research opportunity.
Review RSU’s Research and Treatment Disclaimer here: https://www.renusyndrome.org/terms-of-service
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Contact Citizen Health at support@citizenhealth.com.
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READ ABOUT PRIVACY, SECURITY AND RESEARCH SHARING
Your Information and Your Choice
You remain in control of your information. Participating in research data sharing is optional and requires your consent.
According to Citizen Health:
Your records are maintained in a secure digital profile
Research sharing is optional
Information shared for observational research is de-identified
You choose whether to participate in available sharing opportunities
Citizen Health’s AI tools do not replace medical advice or your healthcare team
Does joining Citizen Health enroll us in a clinical trial?
No. Citizen Health helps organize medical information and may support research opportunities. Joining does not enroll you in a clinical trial or guarantee eligibility for a future study or treatment.
What if I already have a Citizen Health account and want to upgrade to Premium?
You do not need to create another standard account. If you want to try Premium, use this Ari Premium early-access link and connect it to your existing account.
Can international families participate?
Families worldwide are encouraged to explore Citizen Health, but certain features, including automatic provider-record collection and Premium Ari early access may currently be limited to the United States - more to come as this expands internationally. Access may vary by country.
