How do people respond when they receive their amyloid bran scan results and learn about their risk of developing Alzheimer’s disease? Sheila Sutti, MS, CGC, a genetic counselor for BWH’s Genomes2People Research Program, and her colleagues want to find out. The team has received funding and approval for their study, but in order for the study to succeed, the G2P team would need to eventually recruit 68 people at the BWH study site who have a family history of Alzheimer’s disease and are willing to (1) undergo testing for memory and thinking, (2) have a PET brain scan, (3) provide a cheek swab sample, and, (4) learn about their risk of developing Alzheimer’s disease.
Sutti began looking for ways to enroll participants in between Thanksgiving and New Year’s.
“I wasn’t sure where to start, and I thought it would be an inopportune time to try to enroll participants because of the holidays,” said Sutti. After searching, Sutti came upon the Partners Research Portal, a newly launched resource for investigators like her who are looking to enroll people in clinical trials.
“Within just a couple of weeks, we received our first response,” she said. “It’s been a new but great experience. There are so many little details that make it logistically easy to use the portal.”
“Next generation” of trial recruitment
The portal’s ease of use is by design. Jeanhee Chung, MD, MS, director of Patient Engagement, Research IS & Computing, and one of the architects of the current version of the portal, explains that the goal has been to make the portal as user-friendly and time-saving for both investigators and potential participants as possible.
“Our mission is to organize research opportunities available throughout Partners and to support collaboration between the public and our research community,” said Chung. “What we heard from both the general public and from researchers is that they wanted a tool that would let them quickly and easily determine eligibility and get connected.”
The Partners Research Portal brings together and builds on former clinical trials web pages including RSVP for Health, Clinical Trials @ Partners and HOPE. The new site makes trial enrollment open to Partners patients and beyond, and has received 40,000 visitors in the last five months. More than 16,000 people have submitted contact information for clinical trials.
Researchers can upload details about their study’s requirements as well as graphics to help attract interest and make a trial stand out. Potential participants can submit details about how they would like to be contacted (by phone or email, at certain times of day, etc.) to make connecting easier.
Currently, the number of clinical trials at MGH exceeds the number from BWH – about 250 compared to about 50 clinical trials. Chung encourages BWH researchers to start using the portal more for recruitment.
“Many recruitment strategies for clinical trials can be expensive and inefficient. This tool is free – and we want researchers to take advantage of it,” she said.
Sutti and her team have been pleased both with the interface of the portal and with the recruitment successes they have seen so far. Between Jan. 5 and April 7, they received contact information from 15 people who are interested in participating. Sutti says it’s been very helpful to have a comments section where participants can add more details.
“Some people have left us comments like ‘I have a family member with dementia and I want to know about my own risk’ or ‘I studied psychology so I’m very interested in this study,’” said Sutti. “The age range for our study is 65 to 80, and we had one woman contact us who wrote that she is 64, but turning 65 later this year. She was extremely interested in participating, so we made arrangements to reconnect with her a week after her birthday once she becomes eligible.”
To learn more about the Partners Research Portal, please visit here.