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Stories from the Childhood Cancer Data Initiative Community

The Childhood Cancer Data Initiative (CCDI) community is made of a diverse group of children, adolescents, and young adults (AYAs), families, pediatric oncologists, researchers, data scientists, and many others. Each of these individuals shares a commitment to making faster progress in childhood cancer and a belief that harnessing the power of data can be a driver of that progress. Learn more through stories about patient and family experiences, individuals in the broader childhood cancer community, and the people behind NCI’s childhood cancer research and data sharing efforts.

Childhood Cancer Patient and Family Experiences

  • A black woman wearing a black t-shirt and chain necklace, taking a selfie in her home.

    Lisa

    Improving how childhood cancer data is shared could help medical professionals provide the best care for children with cancer as well as survivors, just as they did for Lisa.

  • Black and white photo of young, Black woman with braids, standing against a building.

    Faithanne

    Clinical trial participation is helping Faithanne now but could also provide data to help others in the future.

  • Lisa (a blonde, white woman) stands smiling and leaning into son, Jace (a blonde, white, young adult man).

    Jace and Lisa

    Mother and son Lisa and Jace have worked to fill gaps in brain tumor research, including in data sharing.

  • Micah is a young, light-skinned, non-binary person with short curly hair and glasses. They are wearing a mint green t-shirt and jeans and are smiling at the camera.

    Micah

    Data from survivors like Micah are important for advancing childhood cancer progress.

Childhood Cancer Data Research in the Community

  • Puerto Rican woman (Nilsa Ramirez) sits at a desk with a microscope, framed photo, and papers tacked to a bulletin board behind her.

    Nilsa Ramirez

    Looking at clinical and lab data together can generate more information and lead to greater discoveries, says Nilsa. 

  • A young woman sits looking and pointing a pen at a paper on a desk in a lab office. Her father leans over her shoulder looking at the same paper.

    Sanford and Elana Simon

    Father and daughter Sanford and Elana help collect and organize data about the childhood cancer that Elana was diagnosed with at 12.

  • A professional headshot of Dr. Paula Aristizabal, a Latina with a light skin tone, dark hair, and glasses, smiling at the camera.

    Paula Aristizabal

    Paula believes collecting and sharing data about social determinants of health can improve childhood cancer clinical trials and address health disparities.

  • A professional headshot of Dr. Lynne Wagner, a White woman with a light skin tone and blonde hair, wearing a black blazer and blue top while smiling at the camera and standing in her office.

    Lynne Wagner

    Improving how data is captured from adolescents and young adults is a priority for Lynne, who wants to use patient-reported outcomes to help personalize treatments.

  • Deepa Prasad stands in front of a green, wooded background while looking at something off camera to her right. She is a medium-skinned woman with short, dark hair and is wearing a dark blue top with a light purple brushstroke print.

    Deepa Prasad

    User experience designers like Deepa Prasad help make childhood cancer data sharing more effective.

Childhood Cancer Data Sharing at NCI

  • White man with glasses and grey knit sweater smiling at camera while sitting in front of glass doors. Outside are trees covered in white lights.

    Gregory Reaman

    As CCDI’s scientific director, Greg hopes that CCDI can serve as a model for what’s achievable in cancer research.

  • A White woman with light brown hair wearing a green blouse sitting in front of a large computer screen on the wall.

    Sharon Savage

    Data sharing could make a difference in research like Sharon’s, which focuses on what causes cancer.

  • A man with medium brown skin tone and dark hair, wearing glasses, a blue shirt, a navy-blue tie, and a lab coat, is standing in a lab smiling at the camera.

    Javed Khan

    It’s time that data is in one place for everyone, says Javed, who’s seen just how much technology has evolved to support data collection.

  • Pamela Wolters

    By taking a biological, psychological, and social approach to treating children with cancer, Pam is generating data that could improve childhood cancer care.

  • Brigitte Widemann (a light-skinned, blonde, female doctor in a white lab coat) is smiling and looking at a boy in a blue, long-sleeved shirt who is playing with two plush animals while talking to someone off camera.

    Brigitte Widemann

    Brigitte keeps the needs of children and AYAs at the heart of data sharing efforts.

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