Join the AGSAA Community on Citizen Health

About AGSAA x CITIZEN HEALTH

AGSAA is partnering with Citizen Health (formerly Ciitizen and recently relaunched) to build critical natural history studies for our community - no site visits required! Citizen will do the work to collect your comprehensive medical history into your secure, digital profile and give you the added option to contribute your de-identified data to accelerate research.

This dataset will be anonymized and available/licensed to drug companies to help them develop programs for AGS. Participants get a share of the proceeds, and the data will also be available for free to the AGSAA and academics.

Help our community unlock the insights hiding in our medical data and make huge leaps in understanding AGS and accelerating treatment options. Click the image above to sign up today in less than 5 minutes or go to https://www.citizen.health/partners/agsaa.

WHO?

Right now, we are starting with US patients and families who have been clinically diagnosed with AGS Type 1-9, and those who are receiving clinical care but don’t meet current genetic criteria and fall under “AGS - Other: Undiagnosed/Related Diagnosis.”

For our international families - Citizen is actively reviewing ways to better support international patients in the future and expect to have updates later this year - if you want to be individually notified when opportunities arise in your community, you can join our waitlist.

How does it work?

  1. Create an account: In a newly-improved and simple five minute onboarding process, patients or their caregiver will create a profile and provide a picture of their ID, a few pieces of demographic information and add/select a list of providers where they have received care. Guardianship papers will also be needed in the case of a caregiver signing up on behalf of a patient 18 years or older.

  2. Citizen will do all the work to collect your medical data from all your providers and points of care and provide you access to your data in your secure, digital profile.

  3. With your data finally all in one place, you’re in control of what happens next. Share your citizen profile with your care team to help inform your healthcare decisions, or choose to share your de-identified data - stripped of any personal identifiers - to help power disease-specific research.

  4. If you have any issues, just reach out to support@citizen.health and a human will help guide you through the process.

Why we are partnered with Citizen

  • Citizen is the easiest way for our community to build our own global natural history studies to help accelerate research for treatment options, by complementing research and natural history studies being collected by partner institutions.

  • Citizen offers real value to AGS patient families by empowering them with all their medical data in one secure, digital place.

  • Citizen has already accelerated research into so many rare conditions and is committed to the rare patient community. We can give researchers the answers they need to help design better clinical trials, faster with Citizen.

  • Citizen data is proven and has been used as the single source of natural history data for an FDA submission package. Long and expensive in-person trials are no longer the only options for important natural history studies when we can get the data we need completely digitally with Citizen.

  • Learn even more at https://www.citizen.health/communities.

benefits FOR AGS FAMILIES joining Citizen

  • Gain access

    • All your medical records from different clinicians and hospitals collected for you and stored in one place, forever. Most hospitals only store records for 5-10 years.

    • Share your information easily for second opinions, care coordination or when you urgently need it from the emergency room.

  • Get answers

    • Learn from your disease community

    • Discover how your symptoms, current medications and therapies compare to similar patients at a glance

  • Drive cures

    • Share your health data securely to researchers working on treatments for your disease

    • Be the first to know about cutting edge research, treatments and trials. Get all your medical data collected and power research with just one, five minute sign-up. Completely digital—No clinic visit required!

    • Citizen creates the easiest natural history solution for communities without the burden of in-clinic visits or long surveys

    • If a patient's extracted data is included in a revenue generating program as part of their consent to contribute their de-identified medical data to research through Citizen, they are eligible to receive compensation and share in a portion of that revenue. Patients will receive a notification from Citizen (support@citizen.com) after their data has been included in a revenue generating deal with details on the amount they will be compensated and how to access the compensation.

Research-specific value

  • Citizen unlocks the full power and insights from the otherwise trapped data in our community’s medical history - we don’t need to wait for a ten year, in-person observational study to finish in order to get valuable insights that get us on the path to a clinical trial.

  • Data provided by Citizen can be used to understand the progression of disease, select endpoints for clinical trials, and potentially be used as a control arm in clinical trials

  • Pharma companies are actively looking for this data today - this small investment of your time is worth every minute to help unlock important research.

  • If a patient's extracted data is included in a revenue generating program as part of their consent to contribute their de-identified medical data to research through Citizen, they are eligible to receive compensation and share in a portion of that revenue!

  • Citizen provides a fully digital way to let the power of rare disease community medical data speak, drive research and speed up the time to get treatments to patients.

  • This is the easiest way to power and amplify many research efforts!

  • Researchers need data to design better and more effective clinical trials. Citizen data powers better research by;

    • Improving understanding of the disease and how it affects individuals

    • Providing perspective on how the disease changes over time

    • Improving endpoint selection for use in clinical trials

    • Improving clinical trial planning and design

  • Want to learn more about longitudinal studies that show burden of disease, progression of patient symptoms and genotype/phenotype correlations that have been created by Citizen? Check out some specific research examples in the deck shared below and at https://www.citizen.health/publications

Security and privacy with Citizen

  • Citizen is committed to protecting your privacy. The data governance followed by Citizen ensures secure storage of patient medical records. To learn more about the security measures Citizen takes, please visit https://www.citizen.health/privacy.

  • Citizen uses HIPAA-compliant cloud services Amazon Web Services (AWS) to maintain patient information.

  • AWS is an encrypted platform in widespread use by companies worldwide, and their product reputation depends on keeping data secure.

  • Citizen encrypts data locally and has stringent policies for staff regarding access to data aimed at ensuring your data is protected at all times, trains staff and contractors regularly on their company security policies and requirements.

  • Citizen will never share patient data with any third parties or access it for any other commercial purpose without the patient’s explicit consent.