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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 girl, Abby, wearing glasses and a pink T-shirt, stirs ingredients in a metal bowl with a rubber spatula and smiles at the camera.

    Abby

    Shared data from Abby’s experiences with Philadelphia chromosome–positive ALL could help other children diagnosed with this rare form of leukemia.

  • Woman (Sarah) with long black hair, earrings, and peach-colored blouse with blue and white flowers sits next to her husband. Both smile at the camera.

    Sarah

    Childhood cancer survivor Sarah wants researchers to remember the human side of data.

  • Woman with light skin and long, straight blonde hair wearing a pale pink blouse under a dark jacket stands smiling at the camera.

    Lauren

    Lauren, a medical student and childhood cancer survivor, believes data sharing can lead to targeted cancer treatments with fewer long-term effects.

  • Grace

    Wanting to be a voice for others, childhood cancer survivor Grace is bringing attention to the fight against childhood brain cancer.

  • 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

  • A man (Dr. Xiao-Nan Li) with dark hair and brown eyes wears a striped collared shirt, tie, and dark jacket and smiles at the camera.

    Xiao-Nan Li

    Researchers working with Xiao-Nan's mouse models and data accessible through CCDI may be able to speed up development of childhood brain tumor treatments.

  • An Asian woman with light skin tone wearing a blue blazer (Dr. Mignon Lee-Cheun Loh) smiles at the camera at an outdoor conference event.

    Mignon Lee-Cheun Loh

    For Mignon, CCDI presents opportunities to sequence patients’ leukemias and contribute data that could impact patient care.

  • 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

  • A woman, Dr. Robin Lockridge, with glasses and straight brown hair wearing a yellow shirt and gray cardigan sits at her laptop smiling at the camera.

    Robin Lockridge

    For Robin, the future of childhood cancer data sharing must include collaboration.

  • A woman (Dr. Emily Tonorezos) with long blond hair wears a muted green button-up blouse and sits in a chair, smiling and talking with her hands.

    Emily Tonorezos

    For Emily and her team, CCDI could play a key role in improving childhood cancer outcomes and long-term follow-up.

  • Headshot of Indian woman (Dr. Subhashini Jagu) with hair tied back in a ponytail, wearing a white shirt in front of a white background.

    Subhashini Jagu

    CCDI’s collaborative approach to science is important to Subhashini, who oversees data sharing and accessibility efforts at NCI.

  • Lisa Mirabello

    Accessing large data sets is crucial for scientists like Lisa, who need them for genomic research.

  • 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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