Skip to main content

March 9, 2021 (Burlington, MA): LuMind IDSC Foundation, the National Down Syndrome Society (NDSS), and pharmaceutical leader Eli Lilly and Company (Lilly) recently released findings of a study that identifies barriers to clinical trial participation by people with Down syndrome and Alzheimer’s disease.

The conclusions were presented in November 2020 at the Clinical Trials on Alzheimer’s Disease Conference, and are based on qualitative research, surveys, and focus groups conducted in May to July 2020. The study participants were all U.S.-based caregivers of adults with Down syndrome who answered inquiries about medical and quality of life priorities.

As life expectancy for adults with Down syndrome has increased, so has their risk of a future diagnosis of Alzheimer’s disease. According to the American Medical Association, Alzheimer’s disease is now the leading cause of death for adults with Down syndrome.

“Adults with Down syndrome are continuously under-represented in Alzheimer’s clinical trials, despite their higher risk for the disease than the general population,” said Hampus Hillerstrom, CEO of LuMind IDSC Foundation. “This study helps us understand the challenges and barriers for participation and identifies ways researchers and partners can bring the voices and experiences of people with Down syndrome and their caregivers to these critical studies.”

The evidence-based look into the concerns and motivations of those caring for adults with Down syndrome helped investigators highlight major differences in attitudes toward clinical trials between the Down syndrome community and the general population of people with Alzheimer’s disease. Researchers learned that caregivers of individuals with Down syndrome have very specific criteria when it comes to medical care and they seek out practitioners who have experience providing care to people with Down syndrome.

Heike Mothershed is one of the focus group participants. She shared the experiences of her adult daughter, Natasha, and explained to researchers the importance of communication at all levels of interaction, from the front desk personnel to the healthcare providers.

“A person that interacts with Natasha is one that speaks directly to her, waits patiently for her answers and is willing to learn,” said Heike. She said she feels this approach is a critical key to developing a trusting relationship. “I would like them to establish a rapport with Natasha.”

Heike cited past negative interactions with healthcare personnel who did not listen and who rushed to prescribe treatment without learning more about the family’s needs. Researchers heard similar stories from other survey participants.

Caregivers of people with Down syndrome (very often parents or siblings) were invited to participate in this research by NDSS and LuMind IDSC. Both organizations share a common commitment to bringing facts about scientific research and clinical trials to the Down syndrome community.

“It is essential that we include individuals with Down syndrome and those who care for them in the research process,” said NDSS President and CEO Kandi Pickard. “By designing and conducting research that meets their needs and reflects their experiences, we can ensure relevance and accelerate the impact of these findings on our community.”

“Lilly is honored to participate in this foundational work with LuMind and NDSS. We are hopeful that our experience and expertise in recruiting Alzheimer’s clinical trials in the general population can be used to advance research in the Down syndrome population,” said Phyllis Barkman Ferrell, Global Head of Alzheimer’s External Engagement at Lilly. “Understanding the needs of adults with DS in this research journey is critical so that industry and non-profit organizations can better support the development of new innovations for their unique unmet medical need.”

More efforts will be launched to help inform researchers as to best practices for engaging and serving the Down syndrome community in their work. With the support and input of LuMind IDSC, NDSS, several clinicians, caregivers and industry researchers, Eric Rubenstein, Ph.D., Assistant Professor of Epidemiology at the Boston University School of Public Health, will release a new caregiver survey in 2021 to garner more information about adults with Down syndrome and their caregivers.

About LuMind IDSC Foundation:

The LuMind IDSC Foundation (LuMind IDSC) envisions a world where every person with Down syndrome thrives with improved health, independence, and opportunities to reach his or her fullest potential. LuMind IDSC accelerates research to increase availability of therapeutic, diagnostic, and medical care options and empowers the largest online community of individuals with Down syndrome and their families with education, resources, connections, and support. Since 2004, LuMind IDSC has raised a total of $85M in funding for Down syndrome research to prevent Alzheimer’s onset, improve cognition, develop gene therapies, and advance understanding. For more information, visit

About the National Down Syndrome Society:

The National Down Syndrome Society (NDSS) is the leading human rights organization for all individuals with Down syndrome. NDSS envisions a world in which all people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations and become valued members of welcoming communities. Founded in 1979, NDSS supports and advocates for the Down syndrome community by focusing on three key areas of programming: Resources & Support, Policy & Advocacy and Community Engagement. Within these focus areas NDSS engages in various activities, events and programs such as the National Advocacy & Policy Center, which seeks to create systemic change through engaged advocacy; the National Buddy Walk® Program, which honors and celebrates individuals with Down syndrome in local communities across the world and other initiatives that provide support, informational resources and community engagement opportunities for individuals with Down syndrome and those who support them. Visit for more information about NDSS.