Topics:
Asking your Treating Physician |
Contacting an Investigator Directly
*Consulting an Independent Expert |
Consult checklist |
Resources
How to Inquire about Clinical Trials
A
Guide for Patients and Caregivers
See PDF
overview or click image on right.
You might use our tools to help
Locate Trials
If you have found a study of interest:
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Print the protocol so you
have something to show the
medical providers you consult. |
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Take note of the goal of
therapy.
For example, is it a dose-finding (phase I) study?
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Take note of the
eligibility criteria,
the location of the study, and
the contact information. |
Ask for feedback from the support community:
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If the protocols seem
a good fit, feel free to discuss
one or more of the many peer-based
support forums.
For example, we can help to explain terminology,
help you to locate safety and efficacy reports, or
point you to papers describing mechanisms of action.
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But most importantly:
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Seek
and rely on the guidance of medical professionals,
who have training and
first-hand information about your diagnosis and
clinical circumstances.
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Ask your Treating Physician:
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Review the
Consult Checklist below.
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Doctor: "What is the
standard of care for my diagnosis and clinical
circumstance?
and do you think this (the printed protocol) or some
other study is appropriate?" |
OR
Contact the Investigator Directly:
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Review the
Consult Checklist below.
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Call or email the
investigator using the contact information on the
protocol. |
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Ask the investigator to
contact your doctor on your behalf to discuss the
protocol. |
OR
* Consult an Independent Expert:
This is the PREFERRED METHOD because independent experts will have
first-hand information about your clinical circumstance, will be
aware of many studies, and which are most likely to be appropriate for you
- based on your clinical details and the most appropriate goal
of therapy.
By "independent" we mean an expert who will not administer
therapy, and therefore has no (unconscious) financial interest in his or her
recommendation, and will not limit the conversation to studies
provided at their center. (See also Conflict of
Interest in Treatment Decisions
PAL)
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Review the
Consult Checklist below.
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Doctor: "What is the
standard of care for my diagnosis and clinical
circumstance?
and do you think this (the printed protocol) or some
other study is appropriate?" |
Consult Checklist:
From how
we talk to doctors to what we read, we
can strongly influence the level of care we receive.
See also and print our PDF
overview
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Bring a loved one with you
to the consult (proven to improve the quality of the
consult). |
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Provide a copy of your
questions in writing ahead of the meeting. (Be concise.)
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Key question: What protocol
(standard or investigational) is most appropriate to
my
clinical circumstance and diagnosis?
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What is the level of
evidence for the recommended protocol?
Is the rationale based only on preclinical
evidence?
...
Or on the results of small or large, single arm or randomized
controlled,
clinical studies? |
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What are the main
competing protocols - standard and investigational?
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Am I eligible for the
study? |
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Will my insurance cover
associated costs?
The Patient Protection and Affordability Act will solve
this problem when fully implemented.
The sponsor is obligated to pay for the study drug.
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Is travel or lodging an
obstacle (physically or financially)?
See
Travel and Lodging for Treatment
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Do all of the medical
providers you've consulted agree with the
recommendation?
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Key question: Be sure to
ask for the reason (the rationale) for
the recommendations
(for or against), particularly if you get different
opinions. |
NOTE: Bias does exist in the
medical profession.
However, "considerable research
suggests that professional bias is more frequently the result of
motivational processes that are unintentional and
unconscious."
See When is conflict of interest most likely to become a factor in
medical advice?
PAL
