Founded in 2000, the Jefferson Moss Rehabilitation Research Institute Research Registry is a program that allows Jefferson Moss-Magee Rehabilitation patients and members of the community to learn about research opportunities that may ultimately benefit them or others. It is a unique and valuable resource for Institute researchers and collaborators. As we celebrate the 25th anniversary of our Research Registry, we are excited to reflect on the impacts it has had on our research and the people who have made it possible.
Our Institute Faculty conduct cutting-edge research in movement science; language and communication; and cognition, behavior, and emotion. To answer important questions about the nervous system and how to advance neurorehabilitation treatments, researchers at the Institute recruit volunteers to participate in a wide variety of research studies.
The Research Registry allows researchers to identify individuals who are interested in volunteering for ongoing or future research studies. Individuals who join the Research Registry may have an opportunity to participate in one or more studies that assess speech and language (e.g. aphasia), attention, memory, movement, and/or emotional well-being. These studies include advanced techniques in neuroimaging, neurophysiology, neurostimulation, and robotics, as well as the evaluation of novel treatments and the development of new technology.
Initially, the Research Registry was created by our Institute’s co-founders Myrna Schwartz, PhD, and John Whyte, MD, PhD, as a core facility within a large NIH-funded research center led by Dr. Whyte, called The Cognitive Rehabilitation Research Network. The purpose of the Cognitive Rehabilitation Research Network was to advance research related to the cognitive impacts of stroke, traumatic brain injury, and other disorders.
As Dr. Whyte explained, “The Network was designed to conduct research in these areas and to support other investigators around the country methodologically. As part of the Network, Dr. Schwartz led the Patient Registry, which sought to facilitate enrollment of interested and well-characterized patients into research studies.” Dr. Schwartz reflected that her “most vivid memories of the Research Registry are the hours of discussion with Mary Kline and Bert Costello.” Establishing the registry wasn’t easy, but Dr. Schwartz recognized that, “the willingness of Einstein's IRB Office to work with us on this innovative project is pretty remarkable and well worth acknowledging.” Over the years, the Research Registry has been critical for enrolling participants in studies at our Institute. In addition, Dr. Whyte emphasized that the Research Registry “has also served as a model for other facilities seeking to accelerate research.”
Adelyn Brecher, MS, CCC-SLP, was also involved in the development and organization of the Research Registry, and she succeeded Drs. Schwartz and Whyte as its next Director. Ms. Brecher recalled that she was, “most struck by how readily people wanted to participate.” It was exciting to work with people who were familiar with the potential benefits of participating in research, including access to treatment from leading clinical researchers, novel therapeutic interventions, and continued therapy after insurance coverage for services ended. “Many participants expressed a sense of purpose knowing they were potentially helping to improve treatments that might be given to future patients,” she recounted.
Interest in enrolling in the Research Registry has been high, and often the demand from potential participants has exceeded the scope of the studies that are recruiting participants. Jefferson Moss-Magee Rehabilitation clinicians have been instrumental in driving enrollment in the Research Registry, and working with our clinical colleagues has been tremendously rewarding. “As a researcher, I found the connections that were built with the inpatient and outpatient clinicians who facilitated enrollments to be truly valuable and insightful,” remarked Ms. Brecher.
From 2015 - 2019, the Research Registry was directed by Erica Middleton, PhD. During this time, the Research Registry continued to grow in terms of size and sophistication. In 2019, the team designed and deployed a new multi-user database for the Research Registry to track and manage interactions with participants for recruitment into research studies conducted at our Institute. This was a key milestone in the history of the Research Registry. “The database provides information to match participants into appropriate studies, and it features mechanisms for keeping participant characterization and contact methods current,” noted Dr. Middleton. Currently, the database is undergoing a redesign and software update to enhance its usability and functionality.
Since 2019, the Research Registry has been directed by Sharon M. Antonucci, PhD, CCC-SLP, and it has undergone further growth and development. “The Research Registry is in a dynamic period of expansion,” Dr. Antonucci stated. “Made possible by a dedicated and person-centered staff and the willingness of those who join, the Registry continues to grow to support neurorehabilitation research for new clinical populations as well as to partner with collaborators across the Jefferson Network,” she continued.
Currently there are 2,277 members enrolled in the Research Registry. These members include adults aged 20 – 89 years old with stroke, traumatic brain injury (TBI), and Parkinson’s Disease or Parkinson-like symptoms, as well as individuals who do not have a neurological condition. As our Institute continues to expand and establish new research laboratories, the Research Registry may begin recruiting populations with other neurological diagnoses as well. Participation in each research opportunity is completely voluntary, and to date, members of the Research Registry have contributed to more than 200 different research studies.
Our Institute Faculty are dedicated to improving the lives of individuals with neurological disabilities through research. The time, effort, and dedication of research participants has been critical in our success in advancing knowledge in the fields of neuroscience and neurorehabilitation. For more information about our Research Registry and how to get involved, visit the Registry webpage.