Biliary Atresia Patient Registry
Join the Journey: Be a Part of the BARE Patient Registry
Your Voice Matters in Biliary Atresia Research
We believe every story counts. By joining the BARE Patient Registry for yourself or your little one, you become a key part of a community striving to improve the lives of those affected by Biliary Atresia (BA).
What's This Registry All About?
In partnership with Sanford Research, the BARE Patient Registry is a safe place for you or your child's journey with BA to be heard. Your shared experiences are vital in shaping future treatments and better care for everyone with BA. Whether you're a patient or a parent, your contribution is invaluable.
What Will I Share?
The registry gathers details like patient background, diagnosis, symptoms, day-to-day life, medications, and any surgical experiences. Filling it out takes about 30 minutes. Got questions? We're here to assist! Reach out at BAregistry@bareinc.org.
Why This Registry?
We started this registry to make sure BA research includes the real experiences of families like yours. It's our goal to bring your voices to the forefront of BA research and find better treatments and outcomes for our community.
Powered by Patients and Families
This is a registry driven by patients and their loved ones. You know best when it comes to the impact of BA on your life. Your insights are crucial in advocating for new treatments and, hopefully, a cure.
How Will My Information Be Used?
Researchers can use the anonymized data from the registry for their studies, always respecting your privacy. Your personal details (like names and addresses) are kept confidential. Remember, you're always in control of your data and can remove it anytime.
We've teamed up with Sanford Research CORDS to ensure your information is safe and secure. Our system is HIPAA-compliant and annually reviewed by an Institutional Review Board (IRB) to guarantee your privacy.
Ready to Join?
If you're ready to make a difference, simply scroll down and join us on this journey. Your participation can change lives!
Register Online Today
We Need You: Your Voice Can Make a Difference!
Join us in a heartfelt journey towards better health for Biliary Atresia warriors. By sparing just 30 minutes to share your or your child's story, you become a vital part of a nationwide effort to enhance BA research. Your unique experience is a priceless contribution to paving the way for improved treatments and, with hope, a future cure.