Let's get started.
The survey might take 20 or more minutes (depending on how many details you have to put in there) but you can break it up as well.
If you have any trouble or questions, please note that details can also be found on Sanford’s website along with tutorials:
For direct contact, please reach out to Ben Forred or Alyssa Mendel with any questions or issues at email@example.com, or call them at 1-877-658-9192 (toll free) or 605-312-6465 (8:30-5:00PM CST).
You can leave a message and they will do their best to get back to you within 1-2 business days.
1. All registry participants’ information is de-identified (confidential). Your name and any contact information, although collected, is not shared with anyone without your permission.
2. You will be asked at the beginning of the questionnaire if you are ok with your de-identified data being shared with the HJ Fb group (we are considered the registry client). That would mean we would all be able to see the raw de-identified data whenever we wanted. They will create a monthly report for us for those whom have agreed. If you don’t choose to check yes to share with HJ FB group, filling out the registry info shows your data only to scientists/researchers.
3. Researchers and institutions have data mining programs. They can extract data and look at what they want to look at. They might even be looking for crossover between this and other (misunderstood or rare condition) registries that you might fit into. So you might get a request for you to fill out another registry/questionnaire. You might be asked to participate in other research. You might be approached to ask for more testing done, or to ask to see results from testing we have already had. The opportunities this could provide us with seem huge.
4. Researchers all need our approval to view any identifiable data. In this case they will run it by you to get your approval.
5. Sanford Research (Cords program) travels to many conferences and meetings to let agencies / institutions know about the registries.