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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.

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Childhood cancer patient and family experiences

  • Jace, bald, smiling slightly, hands pressed together in prayer, stands outside in a crowd of people doing yoga.

    Jace

    Processing his experience as a young adult with cancer changed Jace’s perspective on life.

  • Person in graduation gown and stethoscope jokingly holds their mortarboard over a goat’s head.

    Kamalani

    Kamalani’s hope that childhood cancer treatments continue to improve could be possible through better data sharing.

  • Charlie, wearing orange t-shirt and black shorts, at the beach.

    Charlie

    Through the power of data sharing, Charlie was able to benefit from clinical trials that played a critical role in his treatment and recovery.

  • Girl in a blue dress with short hair held back with a headband, standing in a sunflower field with her family.

    Olivia

    Treatment experiences like Olivia’s could help inform treatment plans for other children with cancer.

  • A boy, Cameron, wearing a ball cap and a black and blue striped T-shirt, sits in a restaurant booth and looks toward the camera.

    Cameron

    Shared data on childhood cancers can lead to more targeted therapies, like those that helped Cameron beat brain cancer.

  • Juanita stands smiling at the camera, with dark brown, wavy hair and dark brown eyes, wearing a yellow T-shirt printed with “Behold Be Gold.”

    Juanita

    Juanita shares her experiences with late effects of treatment and why data sharing is important for survivors like her.

  • A woman, Kallie, with blond hair in a ponytail kisses the cheek of a smiling, blue-eyed baby, Sophie, wearing a pink superhero cape and facing the camera.

    Sophie

    Better data sharing could not only make it easier for doctors to research cancers like Sophie’s but also ease stress for caregivers.

  • A young man, Callan, with brown hair and eyes, sits on a stone step wearing a blue button-up shirt and dress pants and smiles at the camera.

    Callan

    Diagnosed with synovial sarcoma, Callan and his family persevered until they got the lifesaving care he needed.

  • Joe and Erika smile and crouch next to their daughter, Melissa. Erika’s arm is around Melissa, who holds a small plastic bucket and smiles at the camera.

    Joe

    Joe seeks to honor his daughter and improve outcomes for children with acute myeloid leukemia by applying artificial intelligence to data.

  • 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.

  • A young woman (Grace) with shoulder-length brown hair is standing and smiling in a room filled with seated people. She is wearing a striped dress with a tie at the waist and has a microphone clipped to her collar. In the background, attendees are seated at tables, engaging in conversation and looking towards the person standing.

    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.

  • Young girl with curly hair, glasses, and a red dress smiling at the camera.

    Thalia

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

Childhood cancer data research in the community

  • Dr. Matt Ehrhardt, with brown eyes and glasses, sits at a desk, pen in hand, wearing a dress shirt and tie and looking pensively into the distance.

    Matt Ehrhardt

    Matt hopes that shared data will improve long-term follow-up care for survivors of childhood and AYA cancer.

  • Woman, Dr. Fernanda Michels, with two long braids wearing a ballcap and sweater with her husband and young son at the Grand Canyon.

    Fernanda Michels

    Motivated by the possibility of helping young people with cancer, Fernanda is working to improve how childhood cancer data is tracked and shared.

  • A woman, Dr. Ethel Ngen, with braided black hair and dark brown eyes wearing a light blue blouse smiles at the camera.

    Ethel Ngen

    Ethel’s imaging data could help doctors find and treat brain injuries from radiation therapy in childhood cancer survivors.

  • A woman, Dr. Smita Bhatia, sits in her office looking at her computer.

    Smita Bhatia

    Smita hopes that increased data sharing and access will lead to discoveries that can be applied to patient care.

  • A man, Dr. Michael Ortiz, with brown hair and brown eyes and wearing a grey suit with a red tie, smiles at the camera.

    Michael Ortiz

    Access to data connected by CCDI could help Michael and others learn about rare childhood cancers faster than ever before.

  • A smiling woman, Dr. Corinne Linardic, with red hair wearing a white shirt and a long, tan skirt sits in a chair with her arm around a child.

    Corinne Linardic

    Data from CCDI could help Corinne and her team learn more about soft tissue sarcomas and find new targets for treatment.

  • 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 photo of a man, Dr. Troy McEachron, who standing in a lab, smiling at the camera, and wearing glasses and a lab coat.

    Troy McEachron

    Troy believes that data sharing is crucial to improving outcomes in young patients with osteosarcoma and increasing participation of underrepresented populations in clinical research.

  • Woman with short brown hair and blue blouse (Payal Khincha) sitting in her office.

    Payal Khincha

    Payal’s work focuses on patients who have rare genetic cancer syndromes, particularly those affected by Li-Fraumeni syndrome.

  • A woman, Dr. Mary Frances Wedekind, with brown hair, brown eyes, and freckles stands smiling at the camera.

    Mary Frances Wedekind

    A collaborative spirit is critical for better understanding the rare cancers that Mary Frances studies.

  • Bonnie Yates standing in a hallway with scientific data and graphs posted on the wall in the background.

    Bonnie Yates

    Bonnie is dedicated to advancing childhood cancer research through the CD33CART Study.

  • A doctor, Dr. Alice Chen, with short, dark hair wearing glasses and a surgical mask sits next to a patient wearing a hat, glasses, surgical mask, and yellow t-shirt in an exam room.

    Alice Chen

    An NCI clinical trial headed by Alice secured the first FDA approval of a drug to treat an advanced form of sarcoma.

  • A woman, Dr. Aubrey Hubbard, with long brown hair and hazel eyes wearing a pink blouse and long earrings stands smiling at the camera.

    Aubrey Hubbard

    Widespread data sharing could improve Aubrey’s ability to uncover genetic changes that lead to childhood cancers.

  • Jason Levine standing with his wife, daughter, and son at the finish line of a race.

    Jason Levine

    Jason’s work sits at the intersection of childhood cancer care and data sharing.

  • 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 is speaking at a podium with a microphone. She has long, wavy hair and is wearing a black outfit. The background features partially visible flags.

    Lisa Mirabello

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

  • 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 sits at a desk with her laptop open and a pencil in her hand.

    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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