Current Research Registries
Welcome to the Rehabilitation Institute of Chicago’s Entry Portal for patient registries. The purpose of this page is to make it easier for investigators to recruit patients for research studies by obtaining access to registries. Patients who are in the registries listed on this page are often willing to volunteer for research studies. Each registry has a contact person who will return your phone call or email and explain to you the requirement for accessing that particular registry.
It is likely that the registry contact will ask you if you have an approved Northwestern University IRB protocol for recruitment of patients and will need you to provide them some documentation about your protocol. At this stage of registry development, unless you are already on a registry protocol, you can expect that the registry contact or their designee will either have to contact patients for you or determine if the registry or a subset of the registry can be released to you so that you may contact patients directly.
Keep in mind that the registry contains private information about patients that is secure and it is essential that this privacy is maintained if you use the registry for recruitment. It is also likely that you will be required by the registry contact person to note your contact with the patient, whether the patient remains interested in research in addition to your own research project, and any other contact or status updates the patient conveys to you. And of course we expect you to be courteous and informative in your patient contacts so that we can continue to maintain the close relationships we have with patients and their family members.
As the Rehabilitation Institute of Chicago transitions to a research-inspired institution with the building of the new hospital, we anticipate further improvements to this patient registry website. Nevertheless, we would appreciate your feedback (email@example.com) on the usefulness of the current page and suggestions for improving it.
Amputee Research Registry
Center for Rehabilitation Outcomes Research Registry
Clinical Neuroscience Research Registry