April 10, 2025
A partnership between a senior living organization and a research company is bridging the gap between clinical research and long-term care, providing access to residents, staff members and families for clinical trials focused on neurodegenerative diseases.
Last fall, Loretto, a nonprofit continuing healthcare organization in New York, launched a collaboration with Ichor Research, a private research company that works with the medical community to make clinical trials and studies available to older adults and their caregivers.
The initial goal of the partnership was to share information and dispel myths about research, bring opportunities to senior living residents, and change the path of Alzheimer’s disease research. The hope is to develop a model to replicate in other parts of the country.
Loretto has a history of providing memory care and considers itself innovative in advancing technology and research, according to Mary Koenig, the company’s vice president of impact and mission integration. Loretto also partners with the Alzheimer’s Association on advocacy efforts. From the company’s perspective, a clinical trials partnership was the next logical step.
“We want to be part of finding a cure, be part of the solution,” Koenig said.
The two organizations initially worked together on a clinical trial evaluating an investigational radiopharmaceutical, which Lisa Sonneborn, Ichor president of clinical trial services, described as a “cutting-edge diagnostic” for Alzheimer’s. The study engaged people with and without Alzheimer’s to see whether a dye could effectively highlight a specific part of the disease process through positron emission tomography scans.
Loretto — which provides assisted living, independent living, memory care, skilled nursing and PACE care and services — is one of multiple clinical trial sites for the study, providing access to consenting residents inside the walls of its communities in non-skilled areas. Sonneborn said that Loretto was a “significant and notable” contributor to the study data by providing access to volunteers in long-term care settings, a volunteer population not highly represented in the past.
Changing the clinical trials landscape
Sonneborn said the effort is an example of how the partnership between the two entities is expanding access to studies for underserved populations and changing the clinical trials landscape. Studies, she said, traditionally have not been designed to be carried out inside long-term care settings.
Most disease-modifying clinical trials, she said, are focused on a specific point in the disease process: soon after diagnosis. Individuals at that stage are easier to communicate with and more proactive in seeking information, Sonneborn said. That focus takes away from other clinical trials for people at a more moderate stage of a disease who are starting to exhibit other symptoms.
“It’s a harder population to reach,” Sonneborn said. “This is almost a forgotten group.”
Traditional methods of sharing education about clinical trials also aren’t tailored to people who are living with cognitive disabilities, or their caregivers, who don’t have the time to seek out those opportunities and information. Sonneborn said that approximately 80% of studies of Alzheimer’s and cognitive decline are delayed or canceled because researchers cannot get information about volunteer participation opportunities to the right groups.
“It’s an obvious gap in the research we knew existed, but no one figured out how to put the puzzle pieces together,” Sonneborn said. “One of the perfect fits [between Ichor and Loretto] was the sentiment about creating opportunities for both sides to share information and feedback.”
When the COVID-19 pandemic hit, Sonneborn said, Ichor realized that no one had the infrastructure or collaborative partnerships to bring clinical trials to residents of assisted living and memory care communities or nursing homes.
With a focus on neurodegenerative diseases such as Alzheimer’s, Ichor adapts protocols and identifies potential participants through a prescreening process. Within weeks of establishing the partnership with Loretto, Sonnoborn said, the company was fielding requests from study sponsors all over the globe.
Along with the initial trial launched in September 2024, Ichor is working with three other study sponsors to adapt protocols for studies this year, including a disease-modifying study that will look at delaying or slowing the progression of cognitive decline, and another study of professional companionship. Ichor also was invited to join the Global Alzheimer’s Platform Foundation site network, a select group of neurodegenerative and central nervous system specialty sites for Alzheimer’s researchers.
Koenig called the opportunity for residents, staff members and families to participate in important clinical trials a way for anyone affected by Alzheimer’s to leave a legacy of service.
“As we age, we experience a lot of losses. One thing we don’t lose is desire for a sense of purpose, which is so critical for healthy aging,” she said. “It allows our residents to give back, allows our families to give back.
“Particiapting is a concrete way to help in the first against Alzheimer’s disease,” she continued.
The makings of a partnership
Sonneborn said that Ichor follows strict guidelines from institutional review boards to not only identify research opportunities but also to educate potential study participants. The company then works with Loretto to educate its residents, families and staff members about participation opportunities via emails, mailings or in-person dinners to fully explain the process.
“I have more people who want opportunities than I can provide studies for,” Sonneborn said. “We have to make sure we’re finding the right study fit. Not everyone is the right fit for every study.”
She said her hope is to eventually have enough opportunities to accommodate everyone who wants to participate in research.
One of the unique aspects of the partnership, Sonneborn said, is that protocols can be flexible, to bring as much of the effort as possible to participants in their homes. That ability allows residents to feel safe.
Sonneborn added that older adults are most successful participating in studies when they are in a place that is familiar to them. Every piece of the puzzle of a study is covered by Ichor, she said, including physicians and nurse practitioners; transportation, if necessary; and any additional services.
As part of its mission to be innovators of care, finding a cure for Alzheimer’s was a driver for Loretto to participate in the partnership, according to Kathleen White, Loretto’s marketing and public relations manager. The opportunity to change the trajectory of dementia comes from an “altruistic place,” she added, and she said she hopes that other long-term care providers understand that older adults need this kind of help and hope.
Although Sonneborn said she isn’t looking to expand to other long-term care locations just yet, she said she is happy to begin educating and speaking out about what such partnerships can look like.
“It’s taken us a lot of time to break down even small barriers, and we’d be happy to be part of that conversation,” Sonneborn said, adding that Ichor is a “small but mighty” company that conducts lab and preclinical work along with clinical trials. https://www.mcknightsseniorliving.com/news/partnership-bridges-gap-between-clinical-research-senior-living/