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gdpawel's picture

Individualized Online Clinical Trial Protocol Version 1.0

Type: 
Web site
Description: 

The traditional meaning of Health 2.0, according to Jane Sarasohn-Kahn's "Wisdom of Patients" has been the use of social software and light-weight tools to promote collaboration between patients, their caregivers, medical professionals and other stakeholders in health.

An example of this in cancer medicine is Individualized Online Clinical Trial Protocol Version 1.0 by the Weisenthal Cancer Group, a Phase II evaluation of individualized cancer treatment with traditional cytotoxic chemotherapy, targeted anti-kinase drugs and anti-angiogenic agents.

With most clinical trials, investigators never give out information as to how people are doing. Most trials are failures with respect to actually improving things. The world doesn't find out what happen until after a hundred or 500 or 2,000 patients are treated and then only 24 hours before the New England Journal of Medicine publication date.

Individualized Online Clinical Trial Protocol Version 1.0 is a totally transparent clinical trial. Every patient who decides to enter a study should know what happened to previous patients. Patients are treated in real time, on the Internet, with the whole world watching to see how they do. It includes weekly progress reports, and if individual patients want, their own blogs as to how they are doing.

Stages have been implemented for a rather innovative clinical trial with cell culture assays, "real time" on the Internet. The purpose of the study is to show that cell culture assay technologies for "targeted" agents really do work. The short-term future of cancer therapeutics is combinations of "targeted" agents.

They are not "marketing" the test beyond the confines of a clinical trial, which will be the most transparent clinical trial in the history of oncology, as all results are going to be reported, in real time, on a week by week, patient by patient basis, on the website.

The Weisenthal website states there are no one-size-fits-all treatments in this trial and no patient unknowingly receives a placebo instead of a promising new drug he/she had hoped to receive. Patient outcomes will be reported online, in real-time, so patients and cancer physicians will learn immediately if and how patients are benefitting from anti-angiogenic, anti-tyrosine kinase, and standard drug combination therapies identified for them by the new test.

It is the first clinical trial in which novel combinations of emerging drugs are tested for activity in biopsy specimens obtained from each individual patient. While many of these potentially effective drugs are highly expensive, one problem has been in determining in advance who would benefit from them, how to make the drugs more effective by using them in combination. The effectiveness of these drugs can increase exponentially when they are combined with other drugs in various ways.

It is a trial in which each patient receives treatment designed for him/her alone rather than a treatment that serves the financial or research interest of the pharmaceutical company or institution which sponsors traditional clinical trials. Until this new test, no technology existed which allowed for individualized laboratory assessment of candidate drug "combinations" prior to administering them to patients.

Contact information: 
Call or e-mail Weisenthal Cancer Group and ask to speak with Connie Rueff, the study coordinator. She will answer any questions you may have and will help you to determine if you are a candidate for entry. (714) 596-2100 or connie@weisenthalcancer.com
Author/Speaker/Performer: 
Weisenthal Cancer Group
ideakbw's picture

Esophageal Cancer Information - Johns Hopkins

Type: 
Web site
Description: 

Dr. Marcia Canto from Johns Hopkins writes about Esophageal Cancer. Great information with pictures and diagrams of the conditions and treatment options. Best source of information regarding Esophageal Cancer I have found.

Author/Speaker/Performer: 
Dr. Marcia Canto from Johns Hopkins
Publish date: 
Current - 2008
missasweetman's picture

My AML Story

Type: 
Web site
Description: 

My Personal Experience with AML. A look into the world of one Cancer Survivor's personal experience.

Contact information: 
Melissa Regelin-Sweetman amlsurvivor2001@yahoo.com
Author/Speaker/Performer: 
Melissa Regelin-Sweetman
missasweetman's picture

Welcome To Planet Cancer -- An Online Social Network for young adults (20's &30's) with cancer.

Type: 
Web site
Description: 

Welcome to Planet Cancer, a community of young adults with cancer in their 20s and 30s. A place to share insights, explore our fears, laugh, or even give the finger to cancer with others who just plain get it.

missasweetman's picture

Planet Cancer

Type: 
Web site
Description: 

Welcome to Planet Cancer, a community of young adults with cancer in their 20s and 30s. A place to share insights, explore our fears, laugh, or even give the finger to cancer with others who just plain get it.

A great loving, and very supportive online community for young people.

On-line Support Group, Weekly Internet Show www.talk-cancer.com

Type: 
Support groups
Description: 

Talk Cancer is all about Sharing Stories, Raising Awareness and Providing Support. My wife has been given a second chance and I want to share it with you. If you or someone you care about has been affected by Cancer then, this show is for you. We are here for you and want to hear from you.

Kadens_mommy's picture

Kaden's Prayer

Type: 
Audio/Video
Description: 

Kaden's pictures set to a heart touching song that explains just how I feel as his mother and his caregiver.

Contact information: 
webmaster@leukemia-cure.com
Kadens_mommy's picture

Leukemia-cure.com

Type: 
Web site
Description: 

This website has leukemia information, stories, support groups and ways you can help.

Contact information: 
webmaster@leukemia-cure.com

Cancer Family Care

Type: 
Organization
Description: 

Cancer Family Care is a great organization available to help cancer patients and their families. They have been a great help for me in providing counseling service to work through the emotional baggage I haven't been able to face alone and in helping me get back on my feet. Additionally, I can't believe how much knowledge they have and I'm getting help figuring out medical care, testing I have not been able to afford in two years, help navigating the disabiltiy system and overall support. I wouldn't survive without them.

The Wellness Community

Type: 
Organization
Description: 

The Wellness Community is a wonderful resource to help cancer patients and their families. They offer may wonderful free meetings and classes to help work through the emotional stuff and learn to cope. I wish I could do something big to support them and return the favor of all they have done to support my journey.

If you need help, this is a wonderful place to begin! They are a national organization with locations in many cities.

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