Rhabdoid Resources:  Web Sites

[Web Sites] [Publications] [Case Summaries]

Contents:

1. Rhabdoid-Related Pages
2. Brain Tumour Pages
3. Cancer Guides
4. Clinical Trials
5. Dictionaries
6. Drug Information
7. General Cancer Pages
8. Medical Journal Search Engines
9. Medical Reference Books

Rhabdoid-Related Pages:  

• CBTRF has partnered with Dr. Jaclyn Biegel from The Children’s Hospital of Philadelphia to prepare a frequently asked questions document for parents of children who have been newly diagnosed with Atypical Teratoid Rhabdoid Tumors (AT/RT).
• OMIM 601607 (genetics of rhabdoid tumours -- entry in the Online Mendelian Inheritance in Man)
• Rhabdoid Kids (this is definitely one to check out: tirelessly maintained by the grandfather of a rhabdoid child, it's easily the best rhabdoid page around, with lots of information on other rhabdoid kids) - closed 2009 09 11 - try Wayback Machine
• Rhabdoid Predisposition Syndrome (entry in the Atlas of Genetics and Cytogenetics in Oncology and Haematology)
• Rhabdoid Tumour (entry in the Atlas of Genetics and Cytogenetics in Oncology and Haematology)
• Rhabdoid Tumour of the Kidney (eMedicine article on RTK, including statistics and clinical information)
• Rhabdoid Tumour Workshop (lists agenda and participants of January 29, 2001 workshop co-sponsored by NCI and the Pediatric Brain Tumor Foundation) 
• Sam's Rhabdoid Page (includes a registry of patients and their treatment details which rhabdoid families can contribute to) - closed - try Wayback Machine
• SMARCB1 (genetics entry in the Atlas of Genetics and Cytogenetics in Oncology and Haematology)

Brain Tumour Pages:

• American Brain Tumor Association (provides information, treatment explanations, support resources and research updates)
• The Brain Tumor Foundation of Canada (information on patient support, resources, fundraising and research)
• The Brain Tumor Society (provides resources for patients and family)
• The Childhood Brain Tumor Foundation (information, articles, related links)
• National Brain Tumor Foundation (provides support and education for patients)
• Pediatric Brain Tumor Consortium (devoted to the study of correlative tumor biology and new therapies for primary CNS tumors of childhood)

Cancer Guides:

• Science of Cancer Tutorial (a description of cancer and its underlying genetic basis, written by Emily's Dad)
• Steve Dunn's Cancer Guide (a guide to researching your own cancer, written by a layperson and cancer survivor)

Clinical Trials:

• cancerTrials  (National Cancer Institute's clinical trials webpage)
• Clinical Trials and Noteworthy Treatments for Brain Tumors (The Musella Foundation's search engine)
• OncoLink/EmergingMed (Clinical Trials Matching Service)
• PBTC Open Protocol Summary (Pediatric Brain Tumor Consortium)

Dictionaries:

• ABTA's Dictionary for Brain Tumor Patients
• National Cancer Insitute's Dictionary of Cancer Terms
• CancerWEB On-line Medical Dictionary

Drug Information:

• Medline plus: Drug Information (drug patient information listed by generic and brand names -- includes chemo drugs)
• Drug Information:  a resource about prescription and over-the-counter medications and includes details about associated side effects to aid in the protection of patients and consumers.

General Cancer Pages:

• Cancer.Gov (general cancer info from the National Cancer Institute, including literature, resources and clinical trials)
• CancerWEB (patient education, resources, references and search links, online dictionary)
• Candlelighters Childhood Cancer Foundation (provides support, advocacy and information for cancer children and their families, for both survivors and bereaved)
• Causes of Childhood Cancer (University of Minnesota newsletter)
• Children's Cancer Web (a guide to internet resources for childhood cancer)
• Foundation for the Children's Oncology Group (includes news, events, advocacy program)
• OncoLink (University of Pennsylvania Cancer Center)
• Pediatric Oncology Resource Center (resources for families)
• Squirrel Tales (an uplifting and practical web site to encourage and empower parents of kids with cancer)

Medical Journal Search Engines:

• BioMedSearch is an enhanced version of the NIH PubMed search that combines MedLine/PubMed data with data from other sources to make the most comprehensive biomedical literature search available.
• CancerLit (NCI's bibliographic literature database)
• National Library of Medicine Gateway Search (allows users to search in multiple retrieval systems at NLM) 
• National Library of Medicine's Pub Med (search the MEDLINE database)

Medical Reference Books:

• The Merck Manual of Diagnosis and Therapy (the online version of the medical classic -- fully searchable)

[Web Sites] [Publications] [Case Summaries]

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Last updated December 18, 2009