International Alzheimer’s study looking for more diverse candidates for clinical trials

A new study hoping to stop Alzheimer’s and Dementia in its tracks is looking for more diverse candidates to help ensure their results are relevant to the whole population.

Felix Iroanyah was first diagnosed with Alzheimer’s by his family doctor in 2008.

“Growing up, he was my best friend,” said his youngest daughter Ngozi Iroanyah. “Very kind and loving the most gregarious smile and laughter you’ve ever seen.”

“He’s from Nigeria, went to England to do his Undergraduate [degree], Masters and then [did] his PhD at Columbia University but faced a lot of racism like a lot of overt in-your-face racism. And he kept going.”

Felix settled in Toronto 1970 where he got married and had three kids, where he passed down his “keep going” mentality to his children. 

Ngozi became his caregiver shortly after he was diagnosed. She is now currently pursuing a PHD on dementia in the Black community and works as a director for the Alzheimer’s Society of Ontario.

She said they took his diagnosis hard.

“We had questions, we had fears, concerns. Just overwhelming feelings. It was, it was hard to find people from a cultural perspective that really understood the nuances of supporting your parent with dementia,” said Ngozi.

Ngozi said Dementia and Alzheimer’s disproportionately impact certain communities, and that’s why she became an advocate.

“Black communities, as the research has shown us, have the highest prevalence rates and highest incidence rates for Dementia, which means that they get Dementia more and faster than any other community,” explained Ngozi.

Researchers at the Toronto Memory Program are working on the worldwide clinical trial, AHEAD, of a drug called Lecanmab, which removes deposits of a substance called “amyloid” from the brain. Researchers say these deposits are found in the brains of people who go on to develop Alzheimer’s.

“The drug is very well studied. We know it clears amyloid very robustly. We know that it slows progression of the disease in people who already have symptoms and what the AHEAD study is looking to do is to determine whether we can actually prevent symptoms in the first place,” said Dr. Sharon Cohen, a neurologist and Medical Director of the Toronto Memory Program.

“So amyloid develops 20 years before people are symptomatic with Alzheimer’s disease. So a huge window of opportunity to intervene.”

The study is enrolling patients until the end of the year, but researchers say they need more racially diverse participants to fully understand the drug’s potential.

“Some minority populations like the Black population are at disproportionate risk … these are all issues that we can understand better when people participate in trials,” said Dr. Cohen.

She said it’s key that the results of the study will be relevant to the broader population.

“To know the answer to that, we have to have enough diversity in our clinical trial population that it mirrors what we would see in the community or the population that we want to treat,” said Dr. Cohen.

Iroanyah said finding Black study participants is difficult for a number of reasons including shame, and distrust.

“Within the Black community, Dementia is a very stigmatized disorder. We don’t talk about Dementia,” said Ngozi. “What we’ve seen from history is that these communities have very much been treated poorly and unfairly in the sense of, ‘We’re going to come in and take what you need and just leave the community on their own, to their own devices.’ However the disease progresses and manifests it’s up to them with no real support from the health care system thereafter or the scientific community thereafter.”

Creating a safe environment or a safe process to have Black populations participate in studies is what the medical community needs to do, according to Ngozi.

“We’re all at risk for this disease, Alzheimer’s. It doesn’t have racial boundaries, geographic boundaries. Let’s all participate and get answers for ourselves, our children, our communities,” added Dr. Cohen.