Team Telomere has been selected to join Citizen Health to accelerate cures, improve daily care, and power studies that reflect real life with a Telomere Biology Disorder.
Advancing TBD Research through Partnership with Citizen Health
Team Telomere has been at the forefront of advancing Telomere Biology Disorder (TBD) research. This partnership with Citizen Health takes our efforts to the next level by creating a comprehensive digital natural history study that puts patients and caregivers at the center of research.
We are inviting any individual impacted by Telomere Biology Disorders to join the Citizen Health platform. Your participation is crucial in building a comprehensive digital natural history study that truly represents our community’s experiences.
Your five-minute sign-up could help accelerate discoveries that lead to improved care and treatments for Telomere Biology Disorders. Every individual that participates brings us closer to breakthroughs that could change the future for our entire community.
The more individuals who join, the stronger our dataset becomes – helping researchers identify meaningful patterns in how Telomere Biology Disorders affect daily life and potentially opening doors to new treatment approaches.
Why This Matters
Traditional natural history studies often require site visits, extensive paperwork, and significant time commitment from those already managing complex care. While these are important, through this digital approach we can easily gather comprehensive data across our community:
- Power our digital natural history study so researchers can gain access to comprehensive, longitudinal data that reflects real-world experiences
- Impacted individuals can contribute to research without additional appointments or travel
- Your medical information works harder for you and the entire Telomere Biology Disorder community
Citizen Health works directly with pharmaceutical companies and has a track record of accelerating drug development and clinical research. By centralizing real-world patient data, Citizen Health will help drive progress in treatment strategies specifically for TBDs.
Your participation means:
- Simplified access to all medical records
- Opportunities to contribute to cutting-edge scientific studies
- A secure and patient-controlled way to share health insights with researchers advancing treatment options
Everyone who signs up plays a critical role in advancing research.
How You Can Help
Your participation is crucial to the success of this initiative. Sign up with Citizen Health by visiting our page and creating your account. (It takes just 5 minutes!) We’ve even created a step-by-step video tutorial to guide you through the process and show just how easy it is.
100 Patients in 100 Days
We are launching the 100 Patients in 100 Days campaign to help accelerate research and ensure those impacted by Telomere Biology Disorders are counted in upcoming studies. The more individuals who sign up for Citizen Health, the stronger our voice in research becomes.
We are working to get 100 community members signed up in 100 days. Will you be part of the change?
Sign up today and take your place in powering what comes next!
From our Citizen Health Manager, Laura Mainz:
“We are excited to partner with Citizen Health to give our community a way to take control of their health while helping accelerate rare disease research. This partnership allows community members to keep their medical records in one secure place while contributing to groundbreaking research that could bring us closer to life-changing treatments. We encourage every individual impacted by a TBD to sign up and be part of this movement.”
Frequently Asked Questions
How long does it take to sign up?
Creating your account takes about 5 minutes. After that, Citizen Health does all the work to collect your medical records.
Is my data secure?
Yes. Citizen Health prioritizes patient privacy with HIPAA-compliant storage, industry-leading encryption, and strict data security protocols. You can be confident that your health information is protected and only shared according to your preferences.
What if I don't live in the US?
While Citizen Health can only collect records on behalf of patients in the US, international patients can still join Citizen and upload their genetic report to contribute to future research datasets. They may upload their other health data if they wish to use Citizen to securely store their medical history.
How will this help advance treatments for Telomere Biology Disorders?
By creating a comprehensive digital natural history study, researchers can better understand how Telomere Biology Disorders affects people over time, identify potential treatment targets, and design more effective clinical trials.