Published December 13, 2019
Spreading the word about ongoing clinical trials at UB once was an incomplete and complicated process that posed challenges for both investigators and potential study participants.
Now the UB Clinical and Translational Science Institute (CTSI), in close collaboration with the Office of the Vice President for Research and Economic Development, has set up an online tool that lists and updates every active clinical trial throughout UB. This Participate in Research portal streamlines the processes of posting and accessing information about ongoing trials.
“When I speak to groups about clinical research at UB, the most common question I get is, ‘Where can I find a list of clinical trials at UB?’ Well, we now finally have it,” says Timothy F. Murphy, CTSI director and SUNY Distinguished Professor in the Jacobs School of Medicine and Biomedical Sciences at UB.
“Before the creation of the Participate in Research portal, UB operated a Study Information database, which listed some ongoing trials, but was not comprehensive or community-friendly. It was very clinical and hard to navigate,” explains Briana Getman, clinical recruitment coordinator at the CTSI, who helped launch the portal.
The portal is linked to the OnCore Clinical Trial Management System, a comprehensive software system designed for clinical research operations and data management. Every UB clinical trial is now tracked by the system, enabling continuous updates of information in the Participate in Research Portal.
The system also tracks financial information about studies, which is extremely useful for investigators, notes Kimberly Brunton, associate director of operations in the Clinical Research Office in the Jacobs School, who was a project lead on the system’s implementation.
Currently, information about more than 200 studies is posted on the portal, Getman says. The number changes from week to week as studies are added or completed.
One key feature of the new system is that each study has a lay language title and description, making it more accessible to a broad audience, particularly individuals from the community. The technical title and more detailed description are also available to faculty and researchers with a single click.
“This separates us from many other major institutions, which simply show the technical title and technical description in their portal directly from OnCore,” Murphy says.
When researchers in any school list a study in Central Study Registration, the posting process begins, Getman says. The registry alerts her to review the particulars of each study. She then translates the titles and descriptions into language that is easy for ordinary people to understand.
The Office of the Vice President for Research and Economic Development hosts the portal webpage, which features tabs identifying specific subject areas, such as mental and behavioral health, dental health and diet/obesity/weight loss. Through the tabs, visitors to the portal can access a list of all ongoing studies in those and other subject areas. This includes cross-disciplinary studies, which is a significant improvement over the previous system, Brunton says.
It is also possible to find clinical trials by keyword, age group and health condition, and to search for trials for which participants will be compensated.
Each study’s summary box includes an overview of the study, a more technical description, eligibility requirements and the primary investigator’s name and contact information. There is also a “Learn More” box that encourages potential participants to contact the research team directly.
“So far the response has been overwhelmingly positive,” Getman says. “We’ve seen that the community, as well as researchers, are very interested. It’s an easy and free way to exchange information.”
The portal has had an average of 120 requests per month since it was launched in a slow rollout in spring 2019, Murphy says.
Elsa Bou Ghanem, assistant professor in the Department of Microbiology and Immunology at the Jacobs School, has her study about the links between white blood cells and bacterial pneumonia in the elderly posted on the portal.
“For us, having the study up there has been very helpful,” Bou Ghanem says. “We get one to two potential donors interested in our study per week. So far, out of 19 people who have contacted us via the portal, six have been enrolled in our study.”
The main purpose of the improved database is to serve the community, Getman says. But she also points out that for residents and prospective students, it provides a strong overview of the research being done here.
“I envision this as another important tool in raising the quality and the breadth of clinical research among UB and its partners,” Murphy says.
I am so glad this exists. When I am working at the research table at Conventus, I often get asked the same question: Where do I go to find research studies?
This brings up another question: If a person does not use or is not computer savvy, is there somewhere those people can find out the same information?
Thanks for your positive feedback, Kathie! We hope the Participate in Research (PIR) portal will be helpful for people who are interested in research opportunities. If someone is talking to our Patient Ambassadors (like you!) at Conventus, they’re taking a positive step towards getting involved in research.
A person can find out how to check out the PIR online by referring to the Community Engagement Team Infographic from the Conventus table.
If a person prefers to learn about research opportunities without using a computer, they can call our Research Helpline at 716-829-2502 for one-on-one help.