Experience with dbGaP controlled access from outside the US?

Question

[cindy.perscheid]

Hi there,

I want to get controlled access to dbGaP - in particular to the data that is linked here (section: "Download from dbGaP"): https://github.com/joed3/GTExV6PRareVariation

I am based at the University of Potsdam, Germany and hence have none of the accounts requested for application (eRA Commons, DUNS number, account in SAM and Grant portal, ...) as I am not enrolled in any project funded by the US government or similar. To me, it seems as if I cannot get access at all to the data. I have read all the FAQ's and manuals I could find at dbGaP and eRA.

Is there anyone (from a non-US institution) who has walked through the application process of dbGaP and can help me with what accounts I really need and can create at all (i.e. to get an eRA Commons account, I should be fine with the rest)?

Best,

Cindy

[GenoMax]

Be ready to be persistent and patient.

[i.sudbery]

Reading that I'm personally quite relieved that not just any tom, richard or harry for a commercial organisation can get access to information that has only been consented by the patients that supplied it for a particular narrow purpose.

[i.sudbery]

Maybe I was lucky, but I applied on the 20th-ish of December and had access by the frist week on the new year, which I wouldn't say was too bad.

[cindy.perscheid]

Genomax, thanks a lot for the link. I had to laugh really really hard. Currently, I am kind of outraged at the same level.

Answer 1

[i.sudbery]

Yes, we access lots of dbGap data from the UK.

The first step is to apply for an eRA account. You will need the help of whomever is designated as the "signing officier" at your university. If your university does not have one, then your university will first need to register. See here: https://era.nih.gov/commons-account-information.cfm

Once your university has an assigned signing officer and account administrator, then you (assuming you are a PI) ask the SO to create you an eRA account associated with the University. You can then submit a request to dbGap (for which you will require help from the SO and in addition the universities head of information security/head of IT).

[cindy.perscheid]

Thanks for the hint. It turns out we already have a DUNS number, so I will probably give it a try. When I read about all the other web pages for registration and always just saw "US government" and "grants" I had the impression that it is not possible for non-US-granted institutions at all. Good to know that it is not so.

Best,

Cindy