Patient Registry
The Life Raft Group continues to expand both the scope and the content of its GIST Patient Registry with medical updates provided by patients.
We utilize the data from this registry to identify critical areas not being covered in a timely way by clinical trials or by the traditional cancer research community, including understanding the non-toxic but life altering side effects of cancer drugs and the implications of changes in drug levels after a clinical trial has started.
What do others have to say about our GIST Patient Registry?
July-August, 2001 LRG Newsletter:
| Patient Registry Pamphlet |
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| Download Pamphlet |
Charles Blanke, M.D., Director, GI Oncology Program, OHSU Oregon Cancer Institute
“What are the implications of patient-generated data?
This is powerful and compelling stuff! I remain incredibly impressed by the data-coordinating abilities of the Life Raft personnel. I see the major purpose of this sort of data as hypothethesis-generating. Unfortunately, it cannot be free of bias and thus cannot stand by itself, but it certainly can point investigators and the Company in the right direction and let us know what we need to be looking at more closely. Thus, its importance cannot be overstated.”
Magic Cancer Bullet, 2003
Daniel Vasella, M.D., CEO of Novartis
Robert Slater
“The Life Raft Group that Norman helped to start (and has since become the leader of) has provided various people, patients, doctors, investigators, with a unique kind of data bank that cannot be replicated anywhere else, not even in patient trials.”
Ferguson Report
Tom Ferguson, M.D.,Editor and publisher of the Ferguson Report
“Bypassing the ‘Lethal Lag Time’
‘One of the great benefits of patient-initiated research is its speed,’ Scherzer says. ….professional research has a built-in lethal lag time-a period of delay between the time some people know about an important medical breakthrough and the time everyone knows. And, as a result, many patients who could have been saved by the latest treatments die unnecessarily. …Physicians are just as much a victim of this lethal lag time as their patients.
In October, 2001, the group published a review of Gleevec’s side effects. And in addition to collecting the usual data, the Life Raft Group’s study broke new ground in several areas:
- It provided data on the quality of the clinical care available to study participants at each of the centers conducting clinical trials.
- It attempted to evaluate the information sources patients relied upon.
- It developed a methodology by which patients could, in effect, serve as their own control group.
- It introduced a new scale for rating the severity of side effects from the patient’s point of view, as opposed to the toxicity standards established for clinical trials by the National Cancer Institute.
The future of medical research
Such patient-initiated medical research projects turn the traditional medical paradigm upside down. Before the Internet, researchers took the lead, research trials were structured to meet their needs and the delay between discovery and dissemination was considered an unavoidable part of the process.
The prospect of research-oriented online support groups offers a number of appealing scenarios. Patient groups could design and conduct their own studies, collecting their own data, analyzing their results, and publishing their results. They could provide researchers with access to perfectly targeted study populations at little or no cost. But whatever role they play, once they become active players in medical research, patient groups will demand a voice in deciding what should be studied and how that research will be conducted. While such e-patient initiatives may encounter some resistance, in the end it seems likely that the financially-strapped medical research establishment will come to consider such e-patient research an offer it can’t afford to refuse.”
George Demetri, M.D., Medical Director of the Center for Sarcoma and Bone Oncology at Boston’s Dana-Farber Center:
“The new research model pioneered by the Life Raft Group is making it possible for patients and family members to contribute to clinical research for their diseases in unprecedented ways. I predict that we’ll be seeing a lot more of this sort of thing in the years to come.”
Sara Solovitch, Wired Magazine, September 2001:
“Cyberspace has spawned a powerful breed of advocates. Consider the case of Gleevec. Members of an internet group spread the word about Gleevec, bringing scores of patients into new clinical trials. Then they went one step further, creating a group called Life Raft, where participants in one trial could share information about the drug’s efficacy, its side effects and their interactions with doctors. Conservative clinical oncologists cringed. Life Raft represented a major break with medical precedence.”
Gilles Frydman, President of Association of Online Cancer Resources:
“As these examples show, patient-driven research will become more and more important, and will provide an example of the way things will go in the future. As other patient groups begin generating their own medical data, it will change the relationships between research professionals, clinicians, and patients quite dramatically. These groups have been phenomenally successful in recruiting new patients for badly needed clinical trials. And I can assure you that their potential role in medical research is not lost on the drug companies.
Those patients taking Gleevec do not consider themselves guinea pigs. They are the recipients of experimental medicine.”
Bernard Glassman, University of North Carolina and Deputy Director for Population Sciences, Lindberger Cancer Center:
“You know, despite the terrible overuse of the term ‘paradigm shift,’ I believe that when patients came together the way the (Life Raft) group did, and accomplish what you have accomplished, even the father of the term … would agree it is the appropriate description. It is an honor to know a person who is part of the solution.”
Barbara Rimer, University of North Carolina and Deputy Director for Population Sciences, Lindberger Cancer Center
“Life Raft is unusually important to our communications research, and for many of the same reasons that it is important to the future of clinical research. We believe that Life Raft will turn out to be the first in what will become a wave of survivor-involved, self-researching virtual teams. As such, Life Raft offers both a model and an inspiration to other survivors and other researchers.
As genomics, proteomics and pharmacology progress, clinical trials will depend increasingly on smaller pools of participants who are genetically appropriate for a particular targeted therapy. This will not be possible in just a few geographical areas, and will require the kind of connectedness and cooperation Life Raft has been able to achieve. At the same time, we will need to identify the risks and benefits of new treatments more rapidly than ever, because the sheer numbers of patients will be smaller. Again, the Life Raft approach to self-monitoring offers enormous potential as well as proven results.”
If you would like to contribute your medical information to
to help us with our research, please contact Life Raft
If you would like to make a donation to
help us improve the Life Raft data collection process, please go to Donate
