The Alzheimer’s Association has launched TrialMatch, which helps people with the disease — as well as their caregivers, families and physicians — find clinical trials based on criteria like diagnoses, disease stages and location.

Congress recently took action regarding Alzheimer’s funding, with a $400 million increase in research funding signed into law in May. According to the association, after years of stagnant funding, the increase marked the second consecutive year Congress acted on its request for more money.

The increase boosted funding at the National Institutes of Health to nearly $1.4 billion, and the financial outlook is good; the NIH Professional Judgment Budget commissioned by Congress already has recommended a $414 million increase in spending on Alzheimer’s research for the fiscal year 2018.

Lindsay Juricek, regional manager of the Alzheimer’s Association-Greater Michigan Chapter, said her office is promoting the national program, TrialMatch, and how it can benefit people affected by the disease in one way or another.

Lindsay Juricek, regional manager of the Alzheimer’s Association-Greater Michigan Chapter in Marquette, holds a TrialMatch card. The Alzheimer’s Association has launched the free service that helps people with Alzheimer’s, their caregivers and families, and physicians locate clinical trials based on personal criteria and location. More than 100 research studies pertaining to the disease and related dementias are underway, with volunteers needed. (Journal photo by Christie Bleck)

With the matching service, she said, people fill out their names, email addresses and zip codes, or telephone numbers, if they prefer.

Juricek said: “We either send them an email link or we call them and build a profile, and then when researchers are going to start research and they say, ‘I need 100 women (age) 50 to 59 with no family history who are Caucasian,’ we can shoot out everyone in their geographic contact and say, ‘Hey, we got a researcher who’s looking to do this study, and this is what this study entails. Are you interested?'”

She knows of people traveling to institutions like the University of Wisconsin and the Mayo Clinic for research.

“People have gone to different places, but research can be really easy stuff or more high level,” Juricek said. “Some people always think research means they’re going to put you on a bunch of drugs.”

That isn’t the case with TrialMatch.

“A lot of times research never gets off the ground because they do much in the forefront on marketing and finding participants that they can’t get enough participants to actually do it,” Juricek said. “So, our office has tried to make it really friendly so that way we can encourage researchers.”

According to the Alzheimer’s Association, TrialMatch narrows results to trials where there’s a reasonable chance for the participant to be accepted for enrollment, saving time for that person as well as the researcher.

Drugs available for treating Alzheimer’s only temporarily improve symptoms and don’t stop the damage to brain cells that causes the disease to progress.

That’s where research is critical.

The trial listings in TrialMatch come from publicly available sources, such as clinicaltrials.gov from the NIH. Also, outreach is being made to research facilities and trial sites across the United States to include their Alzheimer’s/dementia studies in the database.

To be included in TrialMatch, trial sites must submit proof of their approval by an institutional review board, which approves, monitors and reviews research involving people to protect the rights and welfare of the research subjects.

Trials then go through additional vetting by the Alzheimer’s Association before being listed to ensure that listings include only credible trials and investigators.

How TrialMatch works:

≤ People may call 800-272-3900 between 8 a.m. and 8 p.m. Monday through Friday;

≤ Potential trial participants complete a short questionnaire about their diagnoses and current treatments either online at www.alz.org/TrialMatch or over the phone so profiles can be created for them;

≤ The Alzheimer’s Association will compare those profiles with its comprehensive, up-to-date clinical trial database based on specified eligibility criteria, such as treatment history, location and diagnosis;

≤ An Alzheimer’s Association Contact Center specialist will contact potential participants, with their permission, to provide unbiased trial result options and trial site contact information. Specialist will help people identify trials that match their specific eligibility criteria.

TrialMatch will be conducted indefinitely, Juricek said.

Living in the Upper Peninsula should not be a roadblock to taking part in TrialMatch. In fact, she said people already have shown interest in the program.

“Nothing’s going to happen until we start making moves in the right direction, and even though we’re not located near any research hospitals for this, people in the U.P. can still do something,” Juricek said.

Then there’s simply the effort to help the more than 5 million Americans living with the disease, according to the Alzheimer’s Association, with 15 million Americans acting as unpaid caregivers for their loved ones.

It also is the most expensive disease in the United States — at a cost of $259 million this year — with the association estimating that by mid-century, the number of people with Alzheimer’s is set to nearly triple, and costs will balloon to $1.1 trillion.

There’s still work to be done, though, even with TrialMatch.

“I think we still have to break down those myths and barriers and misnomers about what research is,” Juricek said.

The Alzheimer’s Association-Greater Michigan Chapter is located at 309 S. Front St., Suite 233.

Christie Bleck can be reached at 906-228-2500, ext. 250. Her email address is cbleck@miningjournal.net.