NIH-All of Us Study & Rare Diseases Clinical Research Network

@Erinmfs - I'm participating in the All of Us medical research which is NIH funded research (I think) - https://www.joinallofus.org/

I'm guessing that's how I became hooked up to this research consortium, it's through the NIH. I'n reading all of their information on their website, it's quite extensive. I participated in the surveys last year during the quarantine, the results of that survey are very interesting

@johnbishop as an AllofUs Research Study participant, I responded to this survey during the pandemic, here are the results:
https://www.rarediseasesnetwork.org/news/2021-02-10-COVID19-survey-preliminary-results

I've taken quite a few of the surveys but was most interested in the DNA part where they take a blood sample and exam you at a health facility. Unfortunately the only ones they offer are further away that I care to drive so I just take part in the other stuff when I can. I was surprised that Mayo Clinic does not participate which is where I go for my primary health care.

I went to Bethesda and did the DNA part originally, several years ago. I haven’t answered too many surveys. I have a blood sample for the Covid antibody study. If you ever get a chance to goto Bethesda, go! It’s amazing

I’ve been getting invitations to join “All of Us”. I had not heard of this until yesterday, and as I googled it, it sounds like a legitimate opportunity for health research by the NIH. They offer genetic testing etc as part of the research if interested , but ask you to volunteer your medical records by giving them electronic access. Anyway, my question for the group is: does anyone have experience or intimate knowledge about this program, and have thoughts about how it might ever help us or others in the long run?

Hi Debbie, I moved your message about the NIH All of Us Research Program to this existing discussion that @Erinmfs started.
- NIH-All of Us Study & Rare Diseases Clinical Research Network https://connect.mayoclinic.org/discussion/www-rarediseasesnetwork-org/

For anyone interested in learning more about the study, visit https://allofus.nih.gov/

The All of Us Research Program is inviting one million people across the U.S. to help build one of the most diverse health databases in history. Researchers will use the data to learn how our biology, lifestyle, and environment affect health. This may one day help them find ways to treat and prevent disease.

Thanks Colleen!

John - I’m a bit embarrassed to have just learned about and signed up for All of Us after your post was 18 months ago. I received an in/home saliva kit to collect and sent back for DNA analysis and did note it was being mailed to a Mayo lab in MN.

The surveys are kind of interesting. The first study like this one I participated in was Genes for Good - https://genesforgood.sph.umich.edu/ which was similar with lots of different surveys.