Research Corner

At Team Telomere, we know the power of empowering and educating our community. We are fully dedicated to providing you with access to the most current and up-to-date information available. Delve into the latest research highlights, available study opportunities, and research resources.

Research Highlights

Each month, we highlight emerging research in our newsletter to keep our community informed and inspired by the advancements being made for those with Telomere Biology Disorders. Read more about some of our recent highlights:

Research Studies

Needs Assessment for Telomere Biology Disorder Community: Learn more about a study to identify the unmet needs of individuals and families living with Dyskeratosis Congenita (DC) and related Telomere Biology Disorders (TBDs).

Natural History Study for Inherited Bone Marrow Failure Syndromes: Learn more about this prospective cohort that studies Telomere Biology Disorders to understand cancer rates and types, outcomes, and clinical manifestation of these disorders.
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Elixirgen therapeutics: Phase I/II Study to Evaluate the Safety and Tolerability of EXG34217 in Patients with Telomere Biology Disorders with Bone Marrow Failure

Additional Resources

Diagnosis and Management Guidelines

The most up-to-date Telomere Biology Disorders research can also be found within our Telomere Biology Disorders: Diagnosis and Management Guidelines.

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Research & Clinical Trials

To find current research and clinical trials refer to Chapter 30 of our Diagnosis and Management Guidelines: “Finding Clinical Trials.”

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Telomere Biology Disorders Patient Registry

Those impacted by Telomere Biology Disorders play the most critical role in accelerating medical and scientific advancements. Join our Patient Registry to move our field forward!

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#TakeoverThursday

Team Telomere is beyond grateful for all the physicians, health professionals, and researchers who are part of our community and for their important work. We are more committed than ever to fostering a greater connection between our families and researchers to help advance research and diagnostics and treatments until we find a cure for telomere biology disorders. Every other week in 2022, we are planning to have “#TakeoverThursday,” where we want to give our medical and scientific community a space to communicate their work, research updates, and facts about TBDs.

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