Existing Registries:

Click on the links below to explore existing registires!

PubMed

Disease Infosearch

Human Genome Project

DataBib

Reg4All

Looking for more registries?

Visit the Genetic Alliance NETS Registries and Data Repository pages. Once you are on the pages, click on the “Related Tools” tab to access different registries available.

 

Publications

How disease advocacy organizations participate in clinical research: a survey of genetic organizations:

Contributors: Landy DC, Brinich MA, Colten ME, Horn EJ, Terry SF, Sharp RR.

From patients to partners: participant-centric initiatives in biomedical research. :

Contributors: Kaye J, Curren L, Anderson N, Edwards K, Fullerton SM, Kanellopoulou N, et al.

Genetic Alliance Registry and BioBank: a novel disease advocacy-driven research solution. Personalized Medicine.:

Contributors: Terry S, Horn E, Scott J, Terry P.

 

Videos and Webinars

Making Your Organization's Registry and/or Biobank a Reality