Stem Cell Transplant
One Year Update
List of Treatable Diseases
Health Monitoring Equipment
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A clinical trial is a study of how well a protocol
performs on a certain part of the population before
it is released into the public at large. These trials
come in many forms. But people are needed to help
researchers get this information out to the public.
This is where you come in. You can go to
www.clinicaltrials.gov, put in your diagnosis,
and a screen will come up listing the different trials
for that disease. You can read about many different
protocols for your specific disease and the hospital
and group of doctors who are performing that procedure.
There could be more than one procedure. There was
in my case. It did matter in my situation which trial
I used since I have pulmonary involvement. Your physician
should be able to help you decide on the best trial
according to your condition.
Some of the trials have already been approved by the
FDA and are conducting studies. For other diseases,
the trials are not yet open. If you keep visiting the
site you will see when the trials open. This is not
to cause frustration to you, but to give you hope.
You can take this information to your doctor and then
you can make decisions together. You will find that
the more informed you are, the more likely your doctor
will be to consider the information.
The physicians who are conducting the trials are available
and very willing to answer questions. Do take advantage of that.
The clinical trial may not be for you. The stem cell
transplant may not be for you. But you must be your own
advocate. You must trust your inner feelings and if you
think this is right for you, you should go for it.
It is ultimately your decision, it is your body. If
you do not make the call, you will never know.
One question one needs to ask about the protocol of ANY
disease: is total body irradiation used in treatment
of the disease. Radiation can damage the lungs.
Shielding is not enough: radiation can go
where it wants.
You can contact me for more information at advcocate at