Participate in a Study
Seattle Cancer Care Alliance (SCCA) was formed, in part, to bring promising new treatments to patients faster. For patients with myelodysplastic syndrome (MDS) or myeloproliferative disorders (also called myeloproliferative neoplasms, or MPN), this means more treatment options at SCCA than might be found elsewhere.
Many of our patients receive such therapies by taking part in one of many ongoing clinical research studies, or clinical trials, conducted at SCCA and its parent organizations, Fred Hutchinson Cancer Research Center and UW Medicine. The physicians and scientists at SCCA are among the world leaders in research to better understand the causes of these diseases and provide effective treatments. As a patient, you may have access through studies to medications that are not yet on the market.
Why Consider a Study?
Many people with MDS or MPN who come to SCCA participate in clinical trials because standard treatment has been defined for only a small proportion of these patients. Clinical trials give patients access to agents that are not commercially available but have shown promise in pilot studies and are being tested further, such as clofarabine (Clofarex, Clolar) given by mouth, SB1518 (a tyrosine kinase inhibitor), azacitidine (Vidaza) given by mouth (the commercially available drug is given by frequent injection), aurora kinase inhibitors, pomalidomide and others.
Patients involved in such studies receive meticulous attention. Their disease course is followed very closely, and any change in their disease leads to a reassessment to determine the best approach at that time, including the possibility of removing them from the study or involving them in a different one. Our ability to follow and treat patients according to this strategy sets us apart as a unique center with worldwide recognition.
Researchers from SCCA regularly participate in scientific meetings, such as the 10th International Symposium on MDS in May 2009 in Greece, where they present their latest results and exchange information with experts from around the world. As a result, they are able to provide patients with the most recent knowledge in the field and on that basis make recommendations for their care.
Kinds of Clinical Trials
Clinical trials for MDS or MPN typically focus on one of more of these main goals:
- Achieving better levels of healthy blood cells in the blood stream and extending the effects longer
- Improving the cure rate
- Reducing the side effects of treatment
Clinical trials come in four phases. In Phase I trials, investigators try to determine the most effective and safe dosage regimen. In Phase II trials, which involve a larger group of patients, researchers hope to build on what they learned in the first phase by trying to establish response rates and response durations, and by trying to determine what side effects will occur. In Phase III trials, researchers compare the experimental treatment with the standard treatment. In Phase IV trials, researchers monitor the effects of long-term usage.
Finding Clinical Trials
There are many trials underway that relate to the treatment of MDS or MPN. Each trial is designed for a precise disease situation, so there are specific criteria for patients to join the trial.
It can be confusing to sort through lists of trials, which may contain a lot of unfamiliar technical information. Ask your doctor to tell you about trials that might apply to your situation.
If you are not yet a patient at SCCA and would like to know whether we have any trials that you might be able to take part in, you can also ask your doctor to call us to discuss this. Some of our trials are multi-center studies, which means you may be able to participate while still receiving treatment from your doctor in your home community.
Myelodysplastic Syndrome Clinical Trials at at SCCA.
For more information about clinical studies, see the Patient Guide to Clinical Trials which includes Myths vs Facts.