What is the Communication Research Registry?
The Communication Research Registry is a Northwestern University project that supports and promotes research on human communication and associated disorders. It is managed by the Department of Linguistics and the Roxelyn and Richard Pepper Department of Communication Sciences and Disorders. The Core faculty members of the registry administration are Molly Losh, PhD, Tina Griec-Calub, PhD, Charles Larson, PhD, Ann Bradlow, PhD, Sumit Dhar, PhD, and Matt Goldrick, PhD. Additional support comes from the Center for Audiology, Speech, Language, and Learning and the Biomedical Informatics Group.
Currently those involved with the Registry come from the Neurodevelopmental Disabilities Laboratory, the Hearing and Language Laboratory, the Speech Physiology Laboratory, the Auditory Research Laboratory, the Sound Laboratory, and the Speech Communication Research Group. However, the Communication Research Registry is not limited to just members of the aforementioned laboratories; ideally many more researchers will collaborate with the Registry and help strengthen the bidirectional relationship between researchers and Registry Core members.
What Does the Registry Do?
The Communication Research Registry staff maintains a database of individuals and families who want to be informed about research opportunities at Northwestern University. The Registry provides an efficient and confidential way to identify and contact eligible participants about studies and inform members about the latest advancements in research.
What Types of Participants Join the Registry?
In a word, everyone! The Communication Research Registry includes adult individuals and families with children who are interested in participating in research studies. We collect basic demographic information, as well as additional screeners for clinical population, to help best match participants to studies.
How Does the Registry Benefit You?
The Communication Research Registry is a database designed to provide Northwestern University researchers with access to an extensive pool of both control and clinical human research participants.
In addition, the database is designed to provide a pool of participants that can be matched to the most common inclusion and exclusion research study criteria. Finally, the Registry staff will be doing the labor and time intensive screening and diagnostic work typically done with the clinical populations so researchers will not have to.
How Can You Help the Communication Research Registry?
Sharing information about the Communication Research Registry with your participants is a great way to expand the pool of individuals you may recruit from. We will be happy to send you brochures so that you can display them in your laboratory. Individuals can explore the Communication Research Registry and contact us at their convenience.
How Can You Access the Registry?
Northwestern University researchers who request use of the registry will first have to gain separate IRB approval for the following specific uses of the registry:
- Permission to access the registry and perform retrospective analyses
- Permission to contact possibly eligible participants in the registry for future studies in their collaborating department
Once IRB approval has been granted, researchers must submit IRB approval letter to the Registry coordinator along with a signed copy of the Collaborative Agreement and a completed Study Application Form.
The Registry coordinator, in consultation with core directors must approve all research study proposals prior to providing access to registry information. Requests for access to the registry’s participant information will be approved and prioritized according to the criteria as laid out in the Collaborative Agreement.
How Do You Use the Registry?
Northwestern University researchers given access to the Registry may use their NetId to log in and submit a request for a participant release. When requesting a release the researcher has the opportunity to include inclusion and exclusion criteria, expected start and end date of study, and total number of participants needed. Following a submission of a release request, Registry staff will compile a list of up to 20 individuals that match criteria and that are available for recruitment. Researchers will be given two weeks to contact these individuals.
Information from additional screenings conducted by the Registry staff may be released to researchers if an individual chooses to participate in their study.
Please refer to the Collaborative Agreement and CRR Manual for complete details about the Communication Research Registry functions and usage.
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