The Illinois Women's Health Registry was established by Northwestern University's Women's Health Research Institute at the Feinberg School of Medicine to encourage investigator-initiated sex-inclusive research. The role of the Registry is to facilitate the recruitment and identification of women who may be eligible to participate in IRB approved research being conducted at Northwestern University and other research institutions across the state of Illinois. Furthermore, the de-identified data can be used for epidemiological studies to better understand crucial women's health issues.
Investigators who are interested in utilizing the Registry will need to submit an application and sign a user data agreement. The Registry coordinator will review each application to determine that the proposed study has current (or pending) IRB approval and has sufficient protections for subject confidentiality and safety. Upon approval, Registry queries will be conducted by WHRI staff and contact information or de-identified data which match study criteria will be sent to investigators.
For investigators who wish to utilize the Registry to recruit study participants: Investigators can review the registry survey and select specific questions and responses in order to identify study subject eligibility. Individuals who match the study criteria will be sent a letter informing them of their selection as a potential study subject. If there are no objections from the individual after a five-day opt-out period, their contact information will be released to the investigator (or study coordinator) who will follow up to discuss the study. Registry participants may or may not elect to become a subject in an approved research study. This will not affect their ability to remain the Registry database and to be potentially selected for other research projects.
Please note: PIs and staff members will not have direct access to the Registry database. WHRI Staff will perform database inquiries to determine who may be eligible based on the study’s inclusion/exclusion criteria. Study investigators will only be given necessary contact information of participants.
After the participant is contacted by an approved investigator, all procedures and confidentiality issues will fall under the investigators approved research protocol. Finally, we ask that once the study has ended, the investigator fill out a survey to help us analyze the use of the Illinois Women's and Men's Health Registries. The link to the post-completion survey can be found below.
CLICK HERE for the Investigator Application
CLICK HERE for the Post-Completion Survey
Please contact us at firstname.lastname@example.org or (312) 503-1385 if you would like any additional information.