Clinical Trials >  How to Inquire about Clinical Trials

Last update: 01/31/2013

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

7 Reasons to Consider Trials
based on our clinical circumstances PDF

You might use our tools to help Locate Trials

If you have found a study of interest:

	Take note of the eligibility criteria, the location of the study, and the contact information.
	Take note of the goal of the study.   For example, is it a dose-finding (phase I) study, or a phase II with good preliminary evidence, or a phase III comparing the study protocol to the the standard of care?
	Print the protocol so that you have something to show the medical providers you consult.

You might ask for feedback from the support community:

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.

But most importantly:

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:

	Review the Consult Checklist below.
	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

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Contact the Investigator Directly:

	Review the Consult Checklist below.
	Call or email the investigator using the contact information on the protocol.
	Ask the investigator to contact your doctor on your behalf to discuss the protocol.

OR

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* 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)

	Review the Consult Checklist below.
	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?"

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Consult Checklist:

From how we talk to doctors to what we read, we can strongly influence the level of care we receive.

	Bring a loved one with you to the consult (proven to improve the quality of the consult).
	Provide a copy of your questions in writing ahead of the meeting. (Be concise.)
	Key questions: What protocol (standard or investigational) is most appropriate to my clinical circumstance and diagnosis? 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? What are the main competing protocols - standard and investigational? Am I eligible for the study?  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.   Is travel or lodging an obstacle (physically or financially)?     See Travel and Lodging for Treatment
	Do all of the medical providers you've consulted agree with the recommendation?
	Have the experts you consult contact your treating physicians in order to reach a consensus on what treatment protocol is best for you.
	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

Review with your doctor the 7 Reasons to Consider Trials based on our clinical circumstances PDF

 

  

Resources

1. Doctor Visits - A Checklist to Help You Prepare PAL

2. Benefits Versus Risks Merck

3. Conflict of Interest in Treatment Decisions: PAL 

4. Travel for Treatment

5. When to Consider Clinical Trials?

6. Cure Magazine: The Treatment Option You May Be Missing http://bit.ly/bItRI7

7. Things you can do to get your health insurance to cover a clinical trial cancer.gov ... still an issue until 2014, when the Health Care Reform measure kicks in.

8. When is conflict of interest most likely to become a factor in medical advice?  PAL

9. ACT: Please Bring Our Survey to Your Next Consult
   
   to help start the conversation about trials, and
   also to help identify obstacles to clinical trial referrals.