Citizen Health

Written By Heather Margrill

The pharmaceutical industry is actively interested in ReNU! This is incredible , but to get things to the next stage, we're asking ReNU families everywhere to join Citizen Health!

WHAT is Citizen Health: https://www.citizen.health/faq

  • 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.

  • Securely organize medical records into a private, digital profile, no site visits required, and get instant answers based on YOUR personal journey, and help power research that could lead to new treatments.

  • Your real-world experiences could contribute to critical natural history studies, enabling researchers to better understand ReNU, uncover patterns, and accelerate progress toward breakthroughs.

WHY you should participate:

  • ReNU syndrome was only discovered in 2024, meaning no one yet has the full picture of how it develops over time. That picture (a "natural history") is critical because natural history is one of the foundational pieces companies and the FDA rely on.

  • 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.

WHEN should you join:

  • Please create your CRID first, and then register today! The sooner you register, the more anonymous information we can collectively start to use to learn about the progression of ReNU syndrome.

  • The CRID is crucial to using the research data collected across platforms and research programs. Once you create a CRID, share it with each clinical research study that you enroll in.

  • Example for CRID registration: Disease Name: ReNU Syndrome | Gene: RNU4-2 | Variant: n.64_65insT (or your variant)

HOW to register:

  • 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!

Heather Margrill