dGTEx Study Information for Families

The dGTEx project would not be possible without the generosity of donor families who have provided such precious gifts to support this important work. We are grateful to them and their child’s legacy.

What is dGTEx?

The NIH (National Institutes of Health) supports dGTEx. The goal of the project is to create a tissue and data resource that can help scientists understand how genetic changes during development can impact health and disease. By researching how genes change during childhood, scientists can better understand how to prevent and treat many diseases. It is also important to collect tissues from children of all different backgrounds to help reduce health disparities.

What is the impact of dGTEx?

dGTEx will allow scientists to explore how different cells within the body may contribute to various diseases. For example, pediatric cancers are distinct from adult cancers in how they develop and are treated. Normal pediatric tissue is needed to help improve diagnosis and treatments for pediatric cancer, like leukemia. By providing normal pediatric tissue to scientists, the dGTEx project will be an invaluable resource to help medical advancements for families of children with pediatric disease.

“As we develop precision therapies, including potent immunotherapies, there is an urgent unmet need to understand what potential therapeutic targets are also expressed in normal childhood tissues. Using the current GTEx from adult tissues is useful, but we know that children, especially very young children, have different gene expression patterns in their developing organs. The developmental GTEx [project] will be a major tool to streamline pediatric cancer drug development decisions.”

– John Maris, MD, Professor of Pediatric Oncology, Children’s Hospital of Philadelphia

The dGTEx project will also allow scientists to learn how different cells in the brain could play roles in neurological diseases/syndromes and neuro-divergence, like epilepsy and autism spectrum disorder. We hope that this project will help advance our understanding of these neurological conditions that are commonly diagnosed among children. Understanding how children’s cells and tissues change throughout childhood development can help us understand how pediatric diseases develop and how early development changes can lead to adult diseases later.
The impact of donation to dGTEx

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How is the dGTEX study promoting Diversity, Equity, and Inclusion (DEI)?

dGTEx hopes that children and families everywhere will benefit from the project’s genetic and genomic discoveries, ultimately leading to new, life-saving treatments and the prevention of pediatric diseases. Past genetic research efforts have demonstrated limited inclusion of underrepresented groups, including racial and ethnic minorities, broadly restricting what populations benefit from this project.

The dGTEx project is trying to address these past gaps using a unique approach called, Diversity, Equity, and Inclusion 360⁰. In Diversity, Equity, and Inclusion 360⁰, we will work with many community stakeholders and create Community Advisory Boards (CABs).

Building upon GTEx

dGTEx builds on a similar program that researchers launched to study adult tissues in 2010. The adult tissue library and database have been massive resources for scientists. That database has been viewed over 1.8 million times and more than 1,400 scientific papers have come from it. Researchers are using this tool to help advance our understanding and treatment of many diseases like cancer, diabetes, and heart disease. Because the adult-focused program has had such huge benefits to science and medicine, the NIH is expanding the effort to pediatrics. The dGTEx project is similar to the previous program, but this time with children.

Superheroes come in all sizes

Your child’s donation can help scientists better understand how we are similar and also what makes us unique. Donor medical records and genetic information will be stored in a secure database with the donor’s identity remaining confidential.