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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

  • Hailey

    Hailey, a survivor of Hodgkin lymphoma, believes sharing data can help doctors and researchers understand the unique needs of underserved groups.

  • Juanita

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

  • Sophie

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

  • Callan

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

  • Joe

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

  • Abby

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

  • Sarah

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

  • 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.

  • 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.

  • Faithanne

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

  • Jace and Lisa

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

  • Micah

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

Childhood Cancer Data Research in the Community

  • Matt Ehrhardt

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

  • 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.

  • Ethel Ngen

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

  • Smita Bhatia

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

  • Michael Ortiz

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

  • Corinne Linardic

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

  • 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.

  • Mignon Lee-Cheun Loh

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

  • Nilsa Ramirez

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

  • 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.

  • Paula Aristizabal

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

  • 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

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

Childhood Cancer Data Sharing at NCI

  • 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.

  • Payal Khincha

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

  • Mary Frances Wedekind

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

  • Bonnie Yates

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

  • Alice Chen

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

  • Aubrey Hubbard

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

  • Jason Levine

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

  • Robin Lockridge

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

  • Emily Tonorezos

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

  • 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.

  • Gregory Reaman

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

  • Sharon Savage

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

  • 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

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