Volunteers Needed for Clinical Trials of Alzheimer's Disease in Northeastern Ohio

CLEVELAND, Ohio – The long quest for a cure for Alzheimer's disease could be daunting. But ordinary people will not allow it. They are a source of encouragement for doctors and researchers who are working to quell the disease, as well as for people with the disease.

"Participating in a clinical trial gives me and others the opportunity to do what others have done for us in previous trials," said Rochelle Long of Shaker Heights, who has been involved for 17 years. Clinical trials look for answers to the causes of Alzheimer's, pursue treatment strategies and, hopefully, find a cure.

"And, it's a chance to be part of the" army "of people working to find a cure, to eradicate this ruthless disease that tortures the individual and his loved ones," says Long. "While seeking to improve the quality of life of my mother, the fourth of her family to be diagnosed with Alzheimer's disease."

Long, a 62-year-old healthy woman who does not have Alzheimer's, cares for her mother, Shirley, 81, since her illness was diagnosed for the first time. Rochelle Long is one of those involved in clinical trials as researchers strive to find tactics and drugs to fight the disease and its effects.

And more volunteers are needed. "We have learned a great deal about how to treat AD through this process," said neurologist Alan J. Lerner, MD, director of the Brain Health and Memory Center at Beachwood Hospitals.

"We can not do these studies without staff. They are the backbone of what we do, "he said.

Individuals wishing to participate in an Alzheimer's Disease Clinical Trial at University Hospitals can call 216 464-6215 or visit www.UHhospitals.org/memoryresearch.

People are excluded from the trials for a variety of reasons, including some health issues, but Lerner said, "We are always trying to work with the person to see if we can overcome the obstacles."

Currently, 5.8 million Americans live with Alzheimer's disease, the sixth leading cause of death in the United States.

Lerner recalls some beliefs now dispelled about Alzheimer's disease: it can only be detected after the death and autopsy of a person; people with Alzheimer's disease are not aware of their memory loss; this placement in a retirement home is inevitable.

Now, thanks largely to voluntary clinical trials, new imaging tests are enabling doctors to see the proteins commonly found in the brains of people with Alzheimer's disease. It has become clear that most people with memory loss are aware of their problems (although everyone has normal features of forgetfulness in the aging process, called "age-related normal cognitive decline" by some researchers).

And retirement home placement is not inevitable, as caregivers can be helped to manage the living conditions of their loved ones at home for long periods of time.

The Brain Health and Memory Center at University Hospitals is currently recruiting volunteers for its clinical trials. He is working with the Washington-based Global Alzheimer's Platform Foundation (GAP) to reduce disease duration, reduce costs, and improve the effectiveness of clinical trials. GAP President John Dwyer said 15,000 to 20,000 people a year are needed to participate in the trials.

"It's impossible to find a cure if we do not complete the clinical trials needed to find a treatment," says Dwyer. "It is essential that these trials recruit enough participants to scientifically demonstrate that the proposed treatment is safe and effective.

"If people do not register, we can not find treatment. And we must always remember that the first person who will be cured of Alzheimer's disease will participate in a clinical trial. "

The Cleveland University Hospitals and Clinic are national leaders in clinical trial research, according to Dwyer.

"It is well known that the Alzheimer Clinical Trials teams at Cleveland University Hospitals and Clinic are among the best in the world," he said.

"What is less known is that the staff is dedicated and dedicated to the participants in their trials, which makes it a truly positive and rewarding experience. For example, a participant at the University Hospital told me that she viewed her monthly visit to the clinic as her "day at the spa".

Anne Gruettner, 65, of Aurora, and Arleen Twist, 79, of Cleveland Heights, participate in clinical trials.

Unlike Rochelle Long and Twist, Gruettner is herself fighting Alzheimer's. Alzheimer's was diagnosed early in November 2016, nearly a year after the death of his father, Donald, from the disease.

Gruettner started as a volunteer 18 months ago, participated in the study research SNIFF (Nasal Insulin to fight against forgetfulness) and enrolled in another trial.

"Initially, I volunteered for selfish reasons, to prolong my life and slow down the progression of Alzheimer's disease," says Gruettner. "However, once in the SNIFF study, my attitude changed: I really wanted to help and serve all people with Alzheimer's disease. Basically, from "everything around me" to "all around us".

"My general health is good, physically and mentally. I have accepted the fact that I have AD and I am taking full advantage of my day to thank me for remembering what day it is.

"I had a phenomenal experience at the UH Brain Center, Health and Memory for my clinical trial. The staff was informative, attentive and kind. We became like family members.

Twist has been interested in fighting Alzheimer's since his mother, Hazel, died in 1992 at the age of 81. She started participating in clinical trials more than 10 years ago.

"There are mainly positive aspects," Twist said of his participation in trials. "I can more or less define my own schedule of participation. The doctors I meet are wonderful, as are friends and capable. I had to do some MRIs, which I do not like very much, but because they are necessary for the study, I do not consider them negatively.

"I've read many articles on science and realized that so many innovations involving life – as well as technology, physics, and chemistry, and so on. – rely on studies of all kinds. The more we encourage people to participate, the better. The greater the number of studies conducted, the more fruitful the results and the better the results for all of humanity. "

Rochelle Long is a board member of the university hospital minority, encouraging African Americans and Latinos – both disproportionately affected by Alzheimer's but under-represented in research – to get involved.