The Cholangiocarcinoma Foundation (CCF) is excited to partner with Ciitizen to give cholangiocarcinoma patients a way to collect and organize their complete health history, free of charge.
Fundamentally, we believe that your data belongs to you, and you should always have complete control of it.
During this time of year where we are counting our blessings and giving thanks, consider joining the CCF registry and donating your data to help advance research for cholangiocarcinoma. Our goal is 100 new registry joins by 1/1/20.
As an added benefit, for every individual that joins Ciitizen and requests their data Ciitizen will donate $10 to CCF.
100 new registry joins
Campaign ends January 1, 2020
Ciitizen is free for CCF members
Benefits to you
The collection of all of your health data in one secure place so that you can:
- Have a complete medical record that you control at all times
- Coordinate your care with loved ones & your care team
- More easily get second opinions and understand trial eligibility
Benefits to the community
By joining the registry, your data will provide clinically validated data to researchers to help develop therapies and options for our community. It is truly a gift for all those in our community today and in the future.
Who is Ciitizen?
Ciitizen was founded by Anil Sethi in honor of his sister Tania, who died of metastatic breast cancer in 2017.
Our mission is to provide patients their comprehensive health information – including clinical, genomic and imaging data – and give them the choice of sharing it with whomever they want.
How It Works
Create your account
Click the “Join Ciitizen” button above, then enter your email, name, and password.
Request your health records
Search from a list of places you have received care, and add a picture of your photo ID.
We get your records for you
Over the next 2-4 weeks, we will get your health records and add them to your Ciitizen account.
"Thanks for giving me a place that is secure and gives me access to my medical files 24/7 without a hassle."
"When I meet with a new patient, having their complete medical record is invaluable. It lets me get up to speed quickly and determine appropriate treatment right away... making it easy for them is a huge step forward and something every oncology patient should have."
"In a perfect world, there would be one repository so that I, the patient who owns my medical data, could determine who can access my data, whether a second doctor, an institution, or a study that will help myself and other cancer patients."
Frequently Asked Questions
Q: Who is eligible for the beta?
A: Currently we are focused on cancer specifically. Over time we will add additional diseases before eventually scaling to improve healthcare for every person worldwide.
Q: Why is it so important to have your health information?
A: Around the world, a mountain of valuable health information needed to treat patients and accelerate research is trapped in silos because our medical institutions have no incentive to share it. Currently, there are misaligned incentives driving institutional stakeholders to hoard patient data for “competitive advantage,” falsely citing HIPAA and other regulatory requirements as justification for their roadblocks. Ciitizen aims to change that.
Patients have the right under HIPAA to copies of all of their health data and they can share it with whomever they choose, whenever they want. In the hands of those who need it most, personal health information will not only improve care coordination but also has the potential to lead researchers to groundbreaking treatments.
Q: Why was Ciitizen formed?
A: Ciitizen was founded by Anil Sethi in honor of his sister Tania, who was killed by metastatic breast cancer in 2017. Our mission is to provide patients with control of their comprehensive health information (including clinical, genomic, and imaging data) and give them the choice of sharing it with whomever they choose.
Q: I created an account already, but where do I log in?
A: Click “Log In” on the ciitizen.com website and log in with your username and password, or go to app.ciitizen.com and log in directly.
Q: What type of technology do I need to use Ciitizen?
A: All you need is a computer, an Internet connection, and an Internet browser such as Firefox, Google Chrome, or Safari.
Q: What do you do with my health data?
A: Your health data belongs to you. We do not share it with any third parties without your explicit consent. We use your data internally to create your account and to improve our product for your best use. We will always ensure nobody has or gets access to your data without your explicit consent.
Q: Is it safe to keep my information on your platform?
A: Ciitizen uses HIPAA compliant Amazon Web Services (AWS) to maintain your data. AWS is an encrypted platform in widespread use by companies worldwide, and their product reputation depends on keeping data secure. Additionally, we have stringent policies for staff regarding access to data aimed at ensuring your data is protected at all times.
Q: How much does it cost to join Ciitizen?
A: Ciitizen currently does not charge users for use of the platform.
Q: How do you make money?
A: Your data is valuable – and we let you control what happens to it. When there are opportunities for you to monetize your data, Ciitizen will take a transaction fee.