NATURAL HISTORY STUDY
PARTICIPATION IS CRITICAL
Supported by the TANGO2 Research Foundation, this study aims to enhance our understanding of TANGO2 deficiency disorder progression over time, offer opportunities to improve clinical care, establish comprehensive treatment guidelines and ultimately find a cure.
Click Here to Get Started!Study Contacts: Dr. Maria Arrendondo
Email: tango2.research@bcm.edu
Document/Records Fax Number: 713-798-5950
Researchers around the world are studying TANGO2 deficiency disorder to better understand how it affects people over time. This study housed at Baylor College of Medicine and Texas Children’s Hospital has a goal to create the largest international TDD patient registry and collect biological samples that will support future research and potential treatments.
Families who choose to participate may be asked to share medical and family history, as well as past test results such as heart studies (ECGs, echocardiograms, or related procedures) and genetic testing reports. With permission, the study team may also request hospital records. If a skin cell sample (fibroblast cell line) has already been created for a child in a hospital or research lab, parents may be asked to allow that sample to be shared with the study.
By contributing this information, families play a crucial role in helping researchers learn more about TANGO2 deficiency disorder and move closer to better care and therapies.
Who Can Participate?
Any individual diagnosed with TANGO2 deficiency disorder and/or 22q11.2 Deletion Syndrome.
Why Should I Participate?
- A natural history is the single best avenue to study traits of TANGO2 deficiency disorder and how these traits progress over time
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A natural history study helps us understand the signs and symptoms of TANGO2 deficiency disorder and how they may change as children grow.
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By learning from many families together, doctors can gain information that may help guide care during medical emergencies today.
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The study will highlight the most important areas for future research.
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It creates a central registry of patients—an important step toward future clinical trials for new treatments.
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It also makes it possible to collect and store blood and tissue samples, which scientists can use to study TANGO2 at the cellular level and search for new ways to help.
