Have you ever taken part in a Mayo Clinic study?

Posted by da69 @da69, Aug 17, 2023

Cant find where to put this?
Has anyone participated in a Mayo clinic study?
I was there in May and got some answers and was asked to enroll in a study.
I would like to but i am afraid of non stop emails and hidden costs and phone calls.
They say its 100% free and i can do it from home and give a saliva sample and mail it.
I just dont want to open a can of worms.
Any experiences?
Thank you

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I enrolled in a Mayo study which involved having a mammogram at certain intervals. It had nothing to do with my insurances as they were not told I was enrolled.

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I've been in some of the Mayo studies. They explain all data sharing, if there is any at all. You should have the option to drop out at any time.

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Hi @da69, I was also enrolled in several studies with Mayo. Each had different parameters and length of enrollment. But there was minimal input on my time, no excessive emails or communications.
As an example, if there was a blood sample required it was automatically listed on my routine blood work so that I didn’t have to do anything but show up for a previously scheduled appointment. Then, that result was sent directly to the doctor/Fellow/student in charge of that study.

If I remember correctly, one study required 3 followup surveys that I filled out online. There was an initial survey to set a baseline for their information. That study was for one year so every 3 months I’d receive an email with a link to the small online form to fill in.

As @lagrange5 stated, I was also informed about the data usage gathered. It is anonymous and not invasive to my time or privacy and you can opt out.

The data, feedback and statistics we provide through our participation is invaluable in furthering future treatments for other patients. I’m a product of previous data, research and statistics provided for bone marrow transplant patients. By having reports and information in broad data base, people like me were able to receive a much smaller dosage of a strong anti-rejection drug that had previously been considered standard. The new norm is now less, thanks to patients allowing their information via blood results, feedback, etc., to be used.
As a side note, the studies are free and all 3 of mine actually came with either a gift card or gift as a token of their appreciation. ☺️

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Yes, I did the saliva test. No hidden costs. A few emails to update you on how to access results. There is an offer for additional cost if you choose it. No obligation though. No excessive emails. No cost unless you choose extras. No hassle and informative.

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da69 @da69

Like others, I have taken part in many studies.

To answer your questions:
- no charge for any research / study tests
- always voluntary and does not effect your care at mayo
- if sign up and then change your mind, you can always drop out of a study at any time
- the only contact is if follow up tests or surveys required, and that does not happen very often
- your identify is kept confidential in research data and test results are not part of your medical history

Laurie

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My husband is in a study. It is wonderful. They do not pay for transportation to Mayo or lodging there but parking and cabs if needed are paid for. He visits once a year. His tests and appointments last 4 days. The doctor leading the study meets with us for the final appointment. He is an expert and great. I would definitely recommend being in a study.

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I participated in the DNA study as a transplant recipient. I got no phone calls. Signed up via email. Did the saliva test and sent it back. That was it. Got an email when the results were ready.

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MAYO CLINIC will not send endless crap. The Study admins will give clear instructions, make clear requests, may send brief survey forms to fill out and return.

This is your opportunity to participate in a study that might advance medical science.

I hope you will participate.

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@betsypoodle

My husband is in a study. It is wonderful. They do not pay for transportation to Mayo or lodging there but parking and cabs if needed are paid for. He visits once a year. His tests and appointments last 4 days. The doctor leading the study meets with us for the final appointment. He is an expert and great. I would definitely recommend being in a study.

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How do you join a study.

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