Table 3.
Resources for Pediatric Rare Cancers
| Name | Web Site | Content |
|---|---|---|
| Children's Oncology Group | http://www.childrensoncologygroup.org | NCI-supported clinical trials group comprising > 8,000 experts from > 200 children's hospitals |
| Cancer.Net | http://www.cancer.net/coping-and-emotions/managing-emotions/finding-support-and-information/finding-information-and-support-resources-rare-cancers | Oncologist-approved information from ASCO |
| NCI PDQ | http://www.cancer.gov/cancertopics/pdq | PDQ is NCI comprehensive cancer database, with summaries on wide range of cancer topics, registry of > 8,000 open and > 19,000 closed cancer clinical trials from around world, and directory of professionals who provide genetic services; PDQ also contains NCI Dictionary of Cancer Terms, with definitions for > 6,800 cancer and medical terms, and NCI Drug Dictionary, with information on > 2,300 agents used in treatment of cancer or cancer-related conditions |
| American Cancer Society | http://www.cancer.org | Informational tools for various types of cancer from American Cancer Society |
| International Pleuropulmonary Blastoma Registry | http://www.ppbregistry.org | Registry and resource for physicians, families, and patients affected by pleuropulmonary blastoma |
| NORD | http://www.rarediseases.org | Provides advocacy and information for people affected with rare diseases |
| Rare Cancer Alliance | http://www.rare-cancer.org | Provides information and support for adult and pediatric patients with rare cancers |
| NCI | http://www.cancer.gov | Provides information on rare cancers as well as list of open clinical trials for various pediatric and adult cancers |
| ACOR | http://www.acor.org | Provides information and support for patients with cancer and those who care for them through creation and maintenance of cancer-related Internet mailing lists and Web-based resources |
| Orphanet | http://www.orpha.net | Internet portal that provides information on rare diseases and orphan drugs with aim of improving diagnosis and treatment of patients with rare diseases |
| Italian TREP Project | http://www.trepproject.org | TREP group brings together physicians from Italian Pediatric Surgery and Pediatric Oncology Centers, creating network of experts who are dedicated to improving knowledge and cure of patients affected by rare pediatric tumors |
| US SEER | http://www.seer.cancer.gov | NCI SEER program provides information on cancer in US population |
| German Childhood Cancer Registry | http://www.kinderkrebsregister.de | German Cancer Childhood Registry was founded in 1980; registers approximately 1,800 childhood cancer cases from Germany each year |
| IPACTR | http://www.stjude.org/ipactr | Provides resource and registry for patients with pediatric adrenocortical tumors |
| Pediatric and Wild-Type GIST Clinic | http://www.pediatricgist.cancer.gov | Collaborative effort to better understand biology and clinical characteristics of pediatric and wild-type GIST; Web site offers registration form for consideration for referral to clinic |
Abbreviations: ACOR, Association of Cancer Online Resources; ASCO, American Society of Clinical Oncology; GIST, GI stromal tumor; IPACTR, International Pediatric Adrenocortical Tumor Registry; NCI, National Cancer Institute; NORD, National Organization for Rare Disorders; PDQ, Physician Data Query; TREP, Tumori Rari in Età Pediatrica [Rare Tumors in Pediatric Age].