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Links to Internet Resources on Childhood Cancer
This page lists the best (IMHO) sites for childhood cancer and for cancer in general. I call it the "Ped-Onc Editor's Choice Links Page". They are sort of arranged from favorite to less-informative, but each is worth a visit.
National Cancer Institute
What I like about cancer.gov is the depth of information on all types of cancer. I tend to read the "Health Professionals" version of all documents. No other site goes into such detail; to get more detail, one has to read journal articles. They also have patient versions of the information.
The National Cancer Institute (NCI) is a component of the National Institutes of Health (NIH). It is the Federal Government's principle agency for cancer research and training. An older version of the NCI site was re-vamped into "cancer.gov" in early 2002 and the site is very good.
2008: NCI cancer bulletin on pediatric oncology. A wealth of information on the different cancers, their treatment, and survivorship issues.
What the site has to offer:
- PDQ (Physician's Data Query) information for each type of cancer. "PDQ" is a comprehensive cancer database which contains peer-reviewed statements on disease descriptions, treatment, supportive care, clinical trials, etc. Whenever you run across a statement with NCI PDQ next to it, you are assured it is peer-reviewed, up-to-date information.
- Clinical trials information, and directions on how to use the information.
- Cancer statistics.
- Cancer related news.
- Cancer Literauore.
Coverage of all aspects of childhood cancer.
Candlelighters/American Childhood Cancer Association (ACCO) and Canadian
The national Candlelighters Childhood Cancer Foundation is now ACCO. Candlelighters was founded in 1970 by concerned parents of children with cancer. The web site has information on all aspects of childhood cancer, from diagnosis to treatment to coping issues. Informative books (not "booklets", but Books) are available through the web site. Newsletter articles cover important topics in childhood cancer. ACCO is an advocate for childhood cancer issues and helps raise awareness. The national office will help parents find treatment information.
American Society of Clinical Oncology
Complete information on all cancer types, from diagnosis to treatment to coping issues. Especially strong on disease descriptions.
St. Jude's Children's Hospital
St. Jude Children's Research Hospital is known throughout the world for its clinical and scientific contributions to the fight against catastrophic childhood diseases. The site offers information on its latest research results, as well as disease descriptions. The section called Cure4Kids has the latest on treatments for childhood cancers, written for health care professionals.
M. D. Anderson Cancer Center
M. D. Anderson offers an experienced team of specialists and innovative technologies and treatments for pediatric cancers. They offer clinical trials sponsored both by COG and by their own institution. The web site offers good information on the different childhood cancers and their treatment.
Childhood Cancer Guides
Excellent resources for parents of children with cancer. Content is from the books on childhood cancer and leukemi co-authored by Nancy Keene. This site has just about everything.
Alex's Lemonade Stand Foundation
Alex's Lemonade Stand Foundation (ALSF) raises awareness and funds grants for childhood cancer research and offers webinars and symposiums on childhood cancer.
Visit the ALSF website for more information on the following:
- Online Treatment Journal: a way for families to keep track of all childhood cancer related information and can be updated through their computer, smart phone or tablet.
- A survey designed for childhood cancer families so that we can understand the different reasons and ways that cancer impacts families.
Children's Cancer Therapy Development Institue
This institute's mission is to get better drugs for childhood cancer into clinical trials. It is associated with CKN, Cancer Knowledge Network. The CKN has a list of online articles at the following url:
These articles are of interest to parents of children with cancer.
Solving Kids Cancer
What I like about Solving Kids Cancer is the podcasts that they began producing in 2011. They also give grants to research projects. To access the podcasts, look for "This Week in Pediatric Oncology" (TWiPO) on the main page, or go to iTunes' podcast section. These are free. [PF, 2011]
National Academies Press
2005. National Academies Press offers this book either for sale or for free page-by-page online viewing. A good discussion of the issues of drug developments for childhood cancer.
The Never Ending Squirrel Tale is a wonderful, homey site by the friend of a mom of a young girl who has cancer.
What the site has to offer:
- Personal stories and ideas to help parents cope with their child's cancer
- A newsletter of good ideas for cancer parents
- Links to resources
Bandaides and Blackboards
This site is about growing up with medical problems. Although not childhood cancer specific, this is a friendly and useful site.
CureOurChildren is a site authored by a parent of a Ewings patient. This site has excellent original information. Notable: What to do at the time of initial diagnosis, new drugs and treatments for Ewing's Sarcoma, mouthsores, preparing your home for the chemotherapy patient, Take My Hand Project (direct assistance program), special education and disability resources, how to get drugs that are not FDA approved yet, and more.
ACOR has hosted the Pediatric Oncology Resource Center since 1998, and has hosted cancer mailing lists since about 1995. In your author's opinion, a great way to learn about your child's cancer is to join an ACOR list and talk with other parents in the same situation.
By 2002, ACOR itself was re-vamped to include:
- Types of cancers (disease descriptions maintained by NCI)
- Treatment options
- Clinical trials
- Cancer bibliography (books and NCI cancer facts)
- MedLine searches directly from ACOR (click on "Publications" on the main ACOR page)
Steve Dunns' cancer guide. Do not miss this site; sometime when you are Internet researching, allow yourself time to explore this site. The site has no graphics, focusing instead on straightforward information.
- Information and guidance on clinical trials.
- Unconventional treatment.
- Starting point for clinical trial research.
- Discussion of alternative treatments. A link to the "Quack Watch" site.
- Inspiration, straightforward and wonderful.
National Library of Medicine
A great entry page to MedLine, Clinicaltrials.gov, directory of health organizations, LocatorPlus (catalogue of books, journals, and audiovisuals in the NLM collection), NLM gateway, PubMed, ToxNet, and more.
On the National Library of Medicine site (see above), sponsored by NIH.
- Health topics
- Drug information
Dana Farber Cancer Institute
The pediatric cancer section of the Dana Farber Cancer Institute site is well-organized and easy to navigate. Most of the disease information is from NCI (the same as on the cancer.gov site). The site features personal profile stories, information on research in progress at Dana Farber, a link to the Perini Clinic (survivors' program), some helpful information on cancer family issues, and information about the clinic.
CancerCare provides well-written information on pediatric cancers, including:
- When a child has cancer
- Detection and diagnosis
- Types of childhood cancers and how they are treated
- Pediatric Clinical Trials
- Treatment side effects
- End-of-life and bereavement issues
The pediatric section draws on the resources of the entire CancerCare site. CancerCare is a national non-profit organization whose mission is to provide free professional help to people with all cancers through counseling, education, information and referral and direct financial assistance.
The latest in clinical research results are presented at the annual meetings of ASCO.
Akron Children's Hospital Childhood Cancer Center
The pediatric oncology division of Akron Children's Hospital offers highly specialized teams to care for children and teens who have cancer. The web site offers a lot of information on the different cancers and treatment issues in the form of lay articles. The site is especially easy to navigate.
Seattle Cancer Care Alliance
The Seattle Cancer Care Alliance is the combined cancer programs of the Fred Hutchinson Cancer Research Center, UW Medicine, and Children's Hospital and Regional Medical Center. "We are the Pacific Northwest leader in the treatment of childhood cancers." The site has decent sections on cancer descriptions and treatment; even better are the descriptions of the different types of transplants.
OncoLink: A University of Pennsylvania Cancer Center Resource
Disease and treatment information.
"This Battle Which I Must Fight: Cancer in Canada's Children and Teenagers." This is the lead-in statement on the childhood cancer portion of this site. Health Canada contains an abundance of well-written information on childhood caners.
What this site has to offer:
- Descriptions of childhood cancers and treatments.
- Discussions of emotional issues.
- Discussions of unconventional treatments.
- Excellent writings by teens and youngsters with cancer, nicely presented.
- Statistics, discussions of causes.
Although based on leukemia, this page has information relevant to issues of parents of all childhood cancers. BMTs, nutrition, supportive therapies, chemo drugs' effects, and other similar topics are discussed. There is some good, original information on this site.
Children's Cancer Web: A Guide to Internet Resources for Childhood Cancer
This guide aims to provide an overview of Internet resources for childhood cancer and to provide hyper-links to some of the key cancer-related web pages. This is an index site and as such offers little information in its own right; it has been produced with the aim of making it easier for the user to find more specific information quickly. It is mainly the work of an English gentleman named Simon, who has developed the database largely in his personal time.
What the site has to offer:
- Links. But not just links, links, an extremely comprehensive database which is accurate and updated frequently.
Hope Street Kids
A listing of web sites, publications and organizations for parents of kids with cancer. Another web site that is links to other sites rather than original information, but it is worth a visit because, like Children's Cancer Web, they they keep a good compilation of links.
Memorial Sloan-Kettering Cancer Center
The pediatric section of the MSKCC was added to the main site 6/01. It contains information about individual pediatric cancers and bone marrow transplantation, but more importantly, perhaps, it lists ongoing pediatric clinical trials and various treatments available at Memorial Sloan-Kettering Cancer Center's Pediatric Cancer Care. Families can find out how to make an appointment at the hospital, and what to expect when they get here. Note: 7/03, the site continues to grow. Be sure to check out the disease-specific areas for cancer informaiton and also for new treatments offered by MSKCC.
An annotated list of useful links for parents of children with cancer. Oddly enough, this is on a warts web site.
The Tomorrow Fund, Helping Children with Cancer
In 1985, a group of local citizens formed The Tomorrow Fund to help children with cancer in Rhode Island and surrounding areas who come to the Rhode Island Hospital for treatment. The six founders included physicians, teachers, child development experts, and parents of children with cancer. As of June 1998, the site is still growing, so keep an eye on this one! It has a pleasant, friendly interface.
What the site has to offer:
- Links to information
- Stories of and by children with cancer
- Chat rooms
- Activities for kids
Medicine OnLine is a health information service published by Ultitech and financed by Glaxo Wellcome and Pharmacia & Upjohn. Focuses on adult cancers.
What the site has to offer:
- Information library on leukemia. (Other cancers not available at the time of this writing; the leukemia section focuses on adult leukemia.)
- Oncology news.
- Cancer forums and links.
- DoseCalc OnLine. Some information about chemotherapy drugs, as in information on doses and regimens, and comparison of brand and generic names.
American Cancer Society
"Knowledge is power. For the cancer patient, knowledge means the power to understand your specific disease and the best treatment options available." This is a direct quote from one of the ACS pages, and as a mission statement, it is reflected throughout the site. This site has pages and pages of text written to help the cancer patient of all ages. It also offers practical support ideas and contacts for family members.
What the site has to offer:
- Cancer news and research progress.
- Prevention and detection strategies.
- Descriptions of many specific cancers and their treatment. At the time of this writing, they have sections on lymphomas, Wilms, and bone cancers. This part of the site is growing, so check back. When they do write about a cancer, it is very well-written, thorough, and original.
- Fundraising information.
- Services and help for the cancer patient; a directory of local chapters.
An excellent resource (I link to this from the book page too): "Free Medical Books - Over the next few years, many important medical textbooks will be available online, free and in full-text. The unrestricted access to scientific knowledge will have a major impact on medical practice. FreeBooks4Doctors! is dedicated to the promotion of free access to medical books over the Internet."
These pages are intended for informational purposes only and are not intended to render medical advice. The information provided on Ped Onc Resource Center should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you suspect your child has a health problem, you should consult your health care provider.