I took part in a clinical trial. Have you?

I haven't seen a thread regarding AllofUs, so I'll start one 😉

Has anyone else signed up for the All of Us Research program? I did, and I was contacted recently to fill out another survey, 3 surveys actually.
I just saw this online, its a data browser, shows the conditions currently in the research program. It's interesting, only 60 with myasthenia gravis for example.

Have not heard of this, but I’ll surely read the website. Thanks!

Hi Erin, What a great topic to start. You'll notice that I merged the 2 discussions you started related to clinical trials into one discussion thread. I think it would be great to get a conversation started where people can share their experiences about taking part in studies and clinical trials. It can also be a place where people can get answers to questions if they are thinking about taking part in a clinical trial.

@user_chdb5e8ac Erin, let's start with you. Why did you want to take part in the study at NIH? Who suggested that you participate?

Thank you for helping with the organization.

I took part in the NIH study for 2 reasons

I hadn't been to Mayo yet, and I didnt agree with the diagnosis I was tagged with. I wasnt getting help with the numbness, tingling and difficulty breathing that I was experiencing. I was very frightened by the care I was receiving. Forced on me. My MG was not addressed. MG wasnt diagnosed yet.

I also wanted to find my siblings. I was adopted but I had found limited information. I was accepted in the Schizophrenia sibling Study. I knew I had siblings, but no contact information was available.

The NIH study took DNA samples and mapped my brain actually. Researchers identifying DNA for Sz and psychosis.

The outcome of the NIH study was very interesting, NIH says I dont have schizophrenia because I dont have the negative symptoms plus I have more fluid in my brain than other study participants. Neurology at Mayo says I dont have hydrocephalus.

I've had amazing brain tests, I'm happy to say that researchers even measured my acqueduct of sylvius in Bethesda's lab 🙂 test included
Functional MRIs
Magnetoencephalography
Nuclear PET

@user_ch53e9c09 Interesting. When I worked for my medical company I was sent out to draw blood and get other information for the schizophrenia study plus sisters study which is sibling sisters to see about breast cancer in genetics ,environment and other studies Now nih is studying this wonderful.

The study is still available if anyone out there wants to see if they qualify. There are other studies too going obviously.

One neat thing I learned in all this is that water in your brain is measured and that unless you flunk a mini mental status test, fluid on the brain isnt a problem. I haven't flunked one yet.:-)

That sounds like an overall good experience for you, Erin. Interesting how the study also helped you will your goal of discovering your family medical history and putting some fears to rest.

If I understand the timeline correctly, you became a Mayo patient after the results of the study testing but before myasthenia gravis (MG) was identified or diagnosed, right? Did the results of the study give you the confidence to seek a second opinion?

I'd like to bring in fellow Connect members to this discussion about clinical trials. @crstyday40 @burrkay @notaround @fairway5 and @pauldale4 have all mentioned that they have taken part in, declined or considered taking part in a clinical trial.

Why did you decide to seek out a clinical trial?
Did you go ahead with taking part in the trial?
What was your experience? What would you share with others?

That's right. The NIH advised me to speak to a brain surgeon, and that's how I came to Mayo. Seeking a brain surgeon consult.

By then my eye had some ptosis and I was referred to neuro ophthalmology. My MG medication comes from neuro opthamologist.

I volunteered for a post pancreas transplant research project measuring the effectiveness of the transplant. The project is not over yet. It checks mainly activity and blood sugars by several avenues over a period of time in intervals. I wanted to join this research for several reasons: (1) pancreas transplants are still so rare that many people still believe they are not done; (2) results of pancreas transplants are still unpredictable, with some people having completely reliable function and many still requiring frequent glucose testing and injections; (3) my road has not been smooth and I believe my experiences have a great deal to offer to researchers for future transplant patients; (4) the research is neither invasive nor difficult; and (5) expenses are paid. I have already learned that I do not have the BRCA gene and feel some relief from that knowledge. I am open to questions. Thank you for this opportunity to share.