Expanding Research Potential at the Clinical Research Center

By Co-directors Karen Wilson, MD, MPH, and Martin Zand, MD, PhD

One of our institute’s greatest resources is the Clinical Research Center (CRC), which provides infrastructure and staff expertise to URMC faculty, staff, and medical students conducting research studies with human subjects. The CRC facilitates the processes that lead to meaningful research outcomes while supporting and caring for the volunteers who so generously devote their time to the advancement of medicine and science.

As co-directors for the institute, we aim to expand the capabilities of this critical resource for the benefit of our researchers and volunteers, URMC, and the upstate region. This vision will progress along three primary axes: continued ongoing support for research into neuromuscular diseases, gene therapy, and natural history and disease progression; an expansion of capacity with an upcoming construction project; and technological innovation and integration with remote clinical trials.

Track Record of Success

One of the CRC’s major points of pride is its long-running support for a variety of neurology, gene therapy, and neuromuscular disease studies. We estimate that well over half of the studies conducted with CRC support are led by researchers from the Department of Neurology, including investigations into a variety of diseases such as myotonic dystrophy type 2, facioscapulohumeral dystrophy, multiple sclerosis, ALS, and more.

Another highlight is the center’s track record of facilitating natural history and disease progression studies. The research volunteers who come to CRC discuss their medical history and current symptoms with the staff and doctors they meet with, providing an opportunity for further research. Data on research volunteers’ histories as well as specimen sampling of blood, urine, DNA, and muscle tissue are obtained at the CRC.

Such is the reputation of the program that we have research volunteers from all over the country, with several travelling to us internationally. Many of the researchers utilizing the CRC have been in practice and collaboration with Ann Miller, RN, MS, the nurse manager for the CRC, since the early ’90s, predating even the CTSA Program here at URMC. Miller’s institutional knowledge and long-running relationships with these researchers led to this successful legacy.

Flood and Recovery; New Facilities on the Horizon

At the tail end of 2022, the CRC facilities suffered a disaster—a flood that made most of the space unusable. Through an intense effort of cooperation with CRC staff and UR Facilities and Services, the center relocated to the Saunders Research Building to continue operations and avoid long-term interruptions in research projects. Carrie Dykes, PhD, and Christopher Palma, MD, ScM, managed an almost impossible situation to bring operations back online. Without their leadership, the CRC would not have returned to service so quickly.

The old space that was destroyed by the flood had an antiquated ventilation system that prevented the facility from being used as a site for studies involving individuals with COVID-19. We have since secured and spent over half a million dollars to renovate the G-8100 space in the Medical Center, allowing it to be utilized for this important work by the UR Vaccine and Treatment Evaluation Unit. With revised safety protocols, research participants can now be seen elsewhere, and this upgraded unit will soon be available for other researchers, including those requiring research participants to stay overnight.

While visits continue apace despite logistical challenges, we anticipate construction for new and state-of-the-art research facilities for CRC to begin soon. With funds already earmarked for the project, we are excited for work to commence, and hope to have good news to share on that front in the year ahead.

Extending CRC’s Reach

Telemedicine and remote research visits offer new potential avenues of growth for the CRC. As many have grown accustomed to the convenience of remote teleconference systems, the possibility exists to apply that technology to research visits. We may also explore the possibility of in-home nursing services for studies or leverage secure remote communication technology for nursing telemedicine visits.

As we consider the possibilities of new technologies and the changing needs of researchers and research participants, we are excited to have a versatile and dynamic resource in the CRC. URMC researchers can contact the UR CTSI to see how they might leverage the infrastructure and expertise of this incredible center for the benefit of their own research.

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Let CRC Support Your Research

To learn more about how the Clinical Research Center can support your research project, please contact the UR CTSI Research Help Desk at researchhelp@urmc.rochester.edu.

Michael Hazard | 12/7/2023

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