9月是全国儿童癌症宣传月，是识别癌症儿童面临的问题的时候。国家癌症研究所（NCI）和其他机构在儿童癌症研究中的一些新发展有望加速新疗法的发展，并强调共享数据的重要性。
Childhood cancers are rare, with less than 16,000 diagnoses yearly in children and adolescents in the US.
Leukemia is the most common type of pediatric cancer, affecting less than 4000 yearly, whereas very rare childhood cancers affect less than 200 yearly.
相比over 20,000 breast cancer patientswho participated in trials leading to approval of tamoxifen treatment, it is clear that testing drugs for any kind of childhood cancer is particularly difficult.
尽管儿童癌症患者数量很少，但癌症儿童仍为可能性高20倍比成年人参加临床试验，通常会参加多个试验。最近的《儿童竞赛法案》促进了新分子靶向疗法的临床试验的发展，以帮助癌症儿童更早获得新药。
不幸的是，家庭进入审判，不能保证他们的孩子会直接受益。因此，必须使用所有试验的结果来找到新的治疗方法。儿童参与试验的高参与率是科学家了解更多有关儿童癌症和发展新疗法的巨大机会。
儿童参与试验的高参与率是科学家了解更多有关儿童癌症和发展新疗法的巨大机会。
It can be difficult, though, to use data from childhood cancer clinical trials. The existence and location of biospecimens collected in trials may not be well documented, so scientists wanting to study a certain cancer may not be able to find samples they need. Data is stored and collected differently at many institutions, making it hard to combine smaller studies into larger cohorts of data. Studies may focus on collecting different kinds of data or may not adequately document how data was collected. To combat these problems, NCI is working on several new initiatives to make research on childhood cancers easier in the future.
MYPART：我的儿科和成人稀有肿瘤网络
MYPART：我的儿科和成人稀有肿瘤网络作为NCI癌月份的一部分，NCI癌症研究中心已经建立了一个名为的患者参与网络我这边对于患者，家庭，倡导者，临床医生和研究人员，共同努力改善年轻人的生活。MYPART专注于影响39岁及以下人群的罕见实体瘤。今年开放了一项研究，供患者共享其临床，成像和分子数据以及临床试验史。患者可以在家中或参观NIH临床中心参加更详细的治疗建议。通过这种方式，MyPart收集了有关患者在治疗史上的各种结果数据。
MYPART还在诊所举行，将来自世界各地的患者和临床医生召集在一起，专注于特定的癌症。由于大多数临床医生看到很少的罕见癌症患者，因此这些诊所可以比较许多患者并从同事的经验中学习。同样，MyPart主持研究研讨会，将科学家汇集在一起交流思想。
最后，MyPart从罕见肿瘤的年轻人那里收集生物染色，并进行分子分析，以寻找新的结果标记和治疗靶标。MYPART完全致力于共享数据和生物测量，同时保护患者隐私，从而实现有关儿童癌症的新研究。
增强童年癌症的生物群
NCI recently held a workshop bringing together stakeholders in biospecimen collection and biobanking for cancers in young people. The Childhood Cancer Survivorship, Treatment, Access and Research (STAR) Act of 2018 set goals to enhance biospecimen collection during clinical trials, emphasizing selected cancer subtypes with the least effective therapy. The purpose of enhanced biospecimen collection is to help scientists understand why treatments don’t work. The workshop focused on challenges and opportunities for banking children’s tumors and highlighted existing programs.
为研究人员提供更多的数据访问将有助于回答困难的问题，并加快我们发展毒性较小，更有效的治疗和更好结果的能力。
Childhood Cancer Data Initiative
最近，NCI主持了一个专家研讨会，以通过增强数据的共享和使用来探索改善癌症儿童结局的方法。这Childhood Cancer Data Initiative (CCDI)was launched to speed up progress in cancer research for young people. Providing researchers with greater access to data will help answer difficult questions and accelerate our ability to develop less toxic, more effective treatments and better outcomes.
由于在多个研究和机构中收集和访问数据方面存在固有的困难，因此需要一种连接现有数据库的动态基础架构，以使其更容易找到和使用数据。随着越来越多的计算和数据存储成为基于云的基于云，开发工具和方法的机会就已经成熟，从而实现数据共享和知识提取。NCI依靠整个儿科癌症研究界的承诺共享他们可用的数据，并继续增加这种丰富的资源。
Children are taught to share from a young age. Barriers to sharing in medical research include structural, logistical, and cultural factors. National Childhood Cancer Awareness Month is a great time to re-evaluate which barriers are real and which are perceived, and dedicate ourselves to lowering barriers to finding cures for children with cancer.
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