Meet the North Star Review Board!
- PSC Partners Patient Registry
- 5 days ago
- 2 min read
In 2024, the Registry team recently sat down with the leadership at North Star Review Board, who serves as the independent review board (IRB) for the Registry.
Dr. Stephen Rosenfeld, Chair and Executive Director, and Patricia Seymour, Director, had wonderful insights into the history and practices of IRBs, including what their roles look like and how they work with the Registry. Their work includes reviewing study protocols and progress, which for the Registry includes reviewing the consent processes, Registry policies, and any new studies/surveys launched on the Registry platform. IRBs help ensure that the well-being of participants in any studies are protected. In the Registry, this includes making sure that patient privacy and confidentiality is respected throughout all Registry operations.
If you have any questions or concerns as a Registry participant (or prospective participant), you can contact the North Star Review Board at info@northstarreviewboard.org.
About North Star Review Board
“North Star Review Board is a nonprofit Research Ethics Review Board (RERB) founded in 2021 by experienced IRB professionals who wanted to provide a new model of IRB review. Our staff and board members bring decades of experience in board review and operations. We want to assure compliance AND build trust in research as a public good and at a reasonable cost.
While the scope of IRB review is defined by regulation, advances in science and technology raise important issues of trust, rights, and welfare on which regulations are silent. These issues include the implications of research with Big Data, Artificial Intelligence and Machine Learning for science and healthcare delivery, the proper use of genetic data, and the obligation to make research opportunities accessible to all.
Our commitment to offer services to other non-profit organizations and independent investigators ensures that research that is not currently well funded has a chance to be conducted. We believe that researchers in the social sciences, education and in the rare disease space, to name a few, deserve quality regulatory and ethical review without spending nearly their entire research budget on IRB review.
For these and other areas, as an RERB, we acknowledge unanswered ethical questions in ways that promote discussion and give voice to the perspectives of research participants. We want to assure compliance AND build trust in research as a public good.”
Dr. Stephen Rosenfeld, Chair and Executive Director, North Star Review Board
Learn more at learningirb.org.