Feedback from Participants in Clinical Trials

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Beth57
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Feedback from Participants in Clinical Trials

Post by Beth57 »

Hi everyone, I am looking for people who are participating in clinical trials and who would be interested in emailing me about their experiences.

I am a professor who researches issues related to dementia, critical illness and older adults. I also have 2 copies of the APOE4 gene. After I learned my APOE4 status from 23 and Me, I decided to contribute to the research and enrolled in a clinical trial. It has been very interesting to be both a participant and a researcher at the same time.

Currently I am preparing a conference presentation about how researchers can be more empowering and respectful toward their participants. The working title is -- Living with Dementia -- Advice from Your "Subject".

If you are interested, please email me about your experience, especially any advice that you would like to give researchers who are developing and conducting clinical trials. All information will be kept confidential -- I am hoping to learn about a wide variety of participant experiences -- sort of a focus group online -- and then use this information to inform researchers.

My email is Dr.lizjohnston@gmail.com. Thank you, Liz
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CoachMT
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Re: Feedback from Participants in Clinical Trials

Post by CoachMT »

Beth57 wrote:Hi everyone, I am looking for people who are participating in clinical trials and who would be interested in emailing me about their experiences.

I am a professor who researches issues related to dementia, critical illness and older adults. I also have 2 copies of the APOE4 gene. After I learned my APOE4 status from 23 and Me, I decided to contribute to the research and enrolled in a clinical trial. It has been very interesting to be both a participant and a researcher at the same time.

Currently I am preparing a conference presentation about how researchers can be more empowering and respectful toward their participants. The working title is -- Living with Dementia -- Advice from Your "Subject".

If you are interested, please email me about your experience, especially any advice that you would like to give researchers who are developing and conducting clinical trials. All information will be kept confidential -- I am hoping to learn about a wide variety of participant experiences -- sort of a focus group online -- and then use this information to inform researchers.

My email is Dr.lizjohnston@gmail.com. Thank you, Liz
Welcome to the to the Apoe4.info community Liz !

Your upcoming conference presentation sounds interesting and a valuable addition to the research! What a great way to take a perceived negative and view it from the lens of possibility and opportunity for self and the greater good. In reading your post, I thought of the text “Positive Psychology Approaches to Dementia” edited by Chris Clarke and Emma Wolverson. If you haven’t read it already, you may enjoy checking it out. Additionally, if you are looking for resources, the primer is a great starting place to learn about the extensive resources available on the ApoE4.info site. It was authored by a member physician who carries two copies of the ApoE4 allele, is regularly updated and provides information on the science behind the ApoE4 allele, tips on diet and lifestyle choices, biomarkers to check, and prevention strategies. In addition, you may be interested in checking out the thread on Our Stories to learn about fellow community members who are embarking on this journey and share your own story!

Welcome to the forum and good luck on getting participants for your research!
Best,
Mandy
-Certificate for Reversing Cognitive Decline (FMCA)
-Functional Medicine Certified Health Coach (FMCHC)
-National Board Certified- Health and Wellness Coach (NBC-HWC)
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