If you are interested in joining the Sight Outcomes Research Collaborative (SOURCE) consortium, you will need to work with your legal, compliance, IRB, and IT departments to review and complete the following data sharing paperwork. All of these data sharing documents must be completed before we can proceed with data extraction activities for your site. As you review the data sharing paperwork, feel free to email us if you have questions.
SOURCE Membership Application
This is simply a listing of the names and contact information for the key faculty and staff at your site who will be involved. This shouldn’t take more than 10 minutes to complete.
SOURCE Bylaws
This describes the governance structure of SOURCE, how researchers will be able to access SOURCE data, as well as a bunch of other details.
Data Use Agreement (DUA)
Please share this document with a legal officer at your institution to review and sign. If they have any edits that they’d like made so that the DUA complies with specific policies at your institution, please have them use red lining and then we can share their proposed edits with the legal council for SOURCE. If there are any big ticket issues / concerns they have, we can arrange a call between the lawyers to work through them.
Amendment to the DUA
The purpose of this amendment is to permit sites to share data from ocular diagnostic tests (OCT, HVF, biometry, etc..) and free text data (once it has been scrubbed of protected health information) with the repository. There is no obligation for your site to share this data with SOURCE but sites who are willing to share this data will be able to access aggregate data from those diagnostic devices or free text notes from all of the other sites who are also willing to share such data. The diagnostic test data will be linked to the EHR data, greatly enhancing the sorts of studies researchers will be able to perform using the aggregate data. At this point you don’t need to decide whether to contribute this data or not, but if you think you might be interested in sharing such data, please share this amendment with your legal department to review as part of the DUA.
Datavant Site License Agreement / Order Form
Datavant is the company we are using to de-identify all of the data so it is devoid of all PHI and can be safely integrated into the repository and shared among the sites. They are letting us license their software free of charge for SOURCE. Dr. Stein can assist you with obtaining the relevant agreement for your site.
IRB FAQ
Answers for common IRB application questions
