This is the fifth of a five-part, weeklong series studying how Alzheimer’s disease can affect you, no matter your age. Read the other parts here.
PHOENIX — About this time next year, researchers at the Arizona Alzheimer’s Consortium begin sharing important data collected through studies from around the world.
They have federal and commercial approval to move research along a fast track before the number of Alzheimer’s patients hits epidemic proportions.
Drs. Pierre Tariot and Edward Zamrini with Banner Alzheimer’s Institute are doing promising research in South America, the U.S. and online.
“This is a public health catastrophe looming,” Tariot warned government and business leaders. “We are all in this together and we all face it no matter what.”
They’re doing their part to get ahead of the disease and see if early diagnosis is the answer.
To do that, Tariot said it will take tens of thousands of people joining their studies to hunt down all the possibilities for a cure. Yet, he remains optimistic.
“I think it’s very likely that in 10 years, we’ll have hit the bulls-eye,” he said, before adding, “This is a marathon, not a sprint.”
To make it to the finish line, they need you to get into the race, whether you have Alzheimer’s in your family or not. If you’re between 18 and 75 years old, they need you to register at endalznow.org.
In takes about five minutes, to enter your name and age and be asked whether you’re a caregiver and whether you’re already an Alzheimer’s patient. You will also be asked if the disease is known to run in your family.
Once registered, you can surf the site for ongoing studies at every level of Alzheimer’s.
“We have studies for people with mild cognitive impairment, who have mild symptoms but have not developed dementia yet,” Zamrini said.
There is also information about clinical trials with mid-stage Alzheimer’s patients and even “studies for people who have started to develop behavioral problems,” Zamrini said.
The latter would include cases where caregivers are experiencing abuse from late-stage Alzheimer’s patients.
But, it’s the gene match study that has Zamrini’s and Tariot’s attention the most.
It is the recruiting tool for finding people with the elusive Apo E4/E4 genotype, found in less than 3 percent of the population.
“In other words, we would have to test approximately 100 individuals to end up finding two or three people who have the E4/E4 status,” Zamrini explained.
To find hundreds of E4/E4 volunteers for the study, they will need tens of thousands of people to register online.
Those who do register will be sent a cheek swab kit to send a tissue sample.
“After we know that somebody has the E4/E4 profile, they get invited to participate in the generation study,” Zamrini said.
It’s not a club anyone wants to be a member of, but if a person is asked to volunteer for the study, and they agree, they will randomly be asked to participate in either a pill, a placebo or a medicine infusion portion of the study.
The objective, Zamrini said, “is to see if people on the pill have a slower rate of getting Alzheimer’s disease or if monthly infusions of a medication slows down the onset of Alzheimer’s disease.”
For scientific accuracy and ethics, Tariot said study participants who get the actual drug will not be told.
Being selected for such a study will take guts to potentially learn you have a destiny with Alzheimer’s, since at this moment, there still is no cure. Zamrini expects there will be many who will not want to participate in the study but he said he is trying to appeal to the pioneering spirit.
“We’re looking for the people who want to advance science,” he said wistfully, thinking of fathers and mothers who want to look out for their loved-ones. “People who want to provide hope for the future generations.”
To learn more about Alzheimer’s disease and research being done here and around the world, visit the following resources:
KTAR’s Kathy Cline contributed to this story.