What is the importance of patient registries?

Patient registries are powerful tools that accelerate medical and scientific advancements. They do this by collecting data on a patient’s medical history, disease presentations, and other factors in a secure manner. This critical data can then be shared with approved researchers, drug developers, and clinicians to better diagnose, treat, and cure diseases.

Especially in the Telomere Biology Disorder (TBD) community, this is vital. Our community extends across the globe, and connecting all parts of our community will help us decrease the time to diagnose TBDs, foster effective TBD treatments, and improve clinical outcomes for all TBD patients.

Who is Rare-X?

Team Telomere has partnered with RARE-X to provide an exciting new platform for our community to gather, access, and share data with global researchers, clinicians, and drug developers, with the goal of accelerating future treatments and cures for TBDs. RARE-X is a non-profit organization that leverages technology powered by the Broad Institute of MIT and Harvard to support a number of different rare disease organizations, including Team Telomere.

Learn more and get started through our dedicated Rare-X page: https://tbd-dc.rare-x.org/

Meet Heidi Carson, our incredible Data Collection Program Manager

Heidi has been working with RARE-X to research, coordinate, and establish our new patient registry. Her passion to accelerate research and treatments for those with Telomere Biology Disorders has been integral to the success of this launch. She remains available to answer any questions you may have as we move forward.

Heidi Carson lives and works in Silicon Valley. She is connected to Team Telomere through her husband, Chad, who passed away in 2019 due to complications from a bone marrow transplant following a liver transplant that tried to address the health issues caused by his very short telomeres. Heidi is working on several projects with Team Telomere with the dream goal of helping this community develop better treatments and ultimately one day a cure for telomere biology disorders. As Team Telomere’s Data Collection Program Manager, she is currently building a platform for patients and researchers to collaborate and share data. Heidi is also happy to share her experiences navigating telomere disease as a primary caregiver – please feel free to reach out. Heidi lives with her two teenage children and their rescue dog and enjoys traveling, yoga, and learning languages.