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New resource for understanding childhood leukemia

The National Comprehensive Cancer Network (NCCN) today announced the publication of the organization’s first patient and caregiver resource focused on a childhood cancer type. The brand new NCCN Guidelines for Patients: Pediatric Acute Lymphoblastic Leukemia (ALL) shares the latest expert advice for treating infants, children, and adolescents with the most common pediatric malignancy. This guidance is intended to enable patients, their parents or guardians, and other caregivers to advocate for the best evidence-based care available. This new source of information is available for free at NCCN.org/patients thanks to support from the NCCN Foundation. The book is endorsed by Alex’s Lemonade Stand Foundation, National Marrow Donor Program (NMDP)/Be The Match, CancerFree Kids, The Pediatric Cancer Foundation of the Lehigh Valley, and The Leukemia & Lymphoma Society (LLS).

“My heart aches for every child, parent, and guardian who experiences an earth-shattering event like a cancer diagnosis,” said Patrick Brown, MD, Associate Professor of Oncology and Pediatrics, Director, Pediatric Leukemia Program, The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins, Chair, NCCN Guidelines Panels for Adult and Pediatric ALL. “Thankfully, advances in treating pediatric ALL represent one of the most profound successes in medical history. Nearly 90% of the kids who are diagnosed with this type of leukemia can be cured with inexpensive and widely-available therapies, as explained in these guidelines. Our aim in sharing this information is to prepare people for what they’re facing while also giving them reason to feel hopeful.”

NCCN Guidelines for Patients are directly based on the clinical practice versions that inform doctors all over the world of the best way to manage cancer patients. NCCN Guidelines are considered the gold standard for clinical direction and policy in cancer management and are the most thorough and frequently-updated clinical practice guidelines available in any area of medicine. The evidence-based recommendations are formulated by top experts from across the 30 leading cancer centers that are part of NCCN.

The patient guidelines contain the same treatment information, but are written with easy-to-understand wording. They include charts and images, a glossary of medical terms, and suggested questions to ask during appointments. An independent study found them to be among the most trustworthy resources for people seeking online information about cancer.

“We know firsthand how important it is for families to have accurate and trusted information about their child’s treatment plan,” said Liz Scott, Executive Director, Alex’s Lemonade Stand Foundation. “We are honored to endorse the NCCN Guidelines for Patients: Pediatric ALL. There is so much power and hope in information!”

“We want every child around the world to receive the best-possible cancer care,” said Marcie Reeder, MPH, Executive Director, NCCN Foundation. “That’s why it’s important for patients and caregivers to know what their doctors know. Nearly 1 million people visited our patient information website in 2019. I hope they came away with the knowledge and comfort to feel empowered against whatever they might be facing.”

The library of NCCN Guidelines for Patients currently contains nearly 50 different books, including recommendations for breast, colon, lung, and prostate cancers. There are also books on supportive care topics like managing cancer-related distress, nausea and vomiting, side-effects from immune checkpoint inhibitors (ICIs) and chimeric antigen receptor (CAR) T-cell therapy, and special considerations for adolescents and young adults across all cancer types. The books are available for free digital download online or via the NCCN Patient Guides for Cancer App. Printed versions are available for a nominal fee at Amazon.com.

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