NIH SEEKS VOLUNTEERS TO HELP WITH LANDMARK ALZHEIMER’S STUDY:
Study Will Speed Search for Treatments, Cure
This B-roll package was produced for researchers at the University of California, San Diego by GYMR Public Relations. This video material is for the free and unrestricted use of news organizations.
For media inquiries, call Lauren Musiol at 202-745-5100.
For public information, call 800-438-4380 or go to www.nia.nih.gov/Alzheimers/ResearchInformation/ClinicalTrials/ADNI.htm.
Story Background:
Anyone with a loved one with Alzheimer’s disease knows the pain and frustration of this terrible illness and the feeling that there is little you can do to fight the disease. But now there is something people can do for future generations. Researchers are looking for people to participate in a research study, sponsored by the National Institutes of Health, which could help lead to treatments and even a cure for Alzheimer’s.
The research study called the “Alzheimer’s Disease Neuroimaging Initiative” is the most comprehensive of its kind ever to be conducted. The goal of the study is to speed up the search for treatments and cures for Alzheimer’s disease by seeing whether imaging of the brain (through MRI or PET scans) every six months can help predict and monitor the onset and progression of the disease. The study also will collect and test blood and, for some participants, cerebral spinal fluid to determine if these biomarkers can predict and monitor the disease.
It is hoped that imaging techniques and biomarkers will prove useful in testing the effectiveness of new therapies in slowing the progression of Alzheimer’s or preventing the disease altogether. This landmark study will involve 58 research sites across the U.S. and Canada, and 800 adults will enroll as study participants.
Researchers are looking for people who:
- Are between 55 and 90 years of age
- Are in good general health with no memory problems OR are in good general health but have memory problems or concerns OR have a diagnosis of early Alzheimer’s disease
- Are fluent in English or Spanish
- Are willing and able to undergo the test procedures
- Have a study partner – a friend or relative who can accompany the volunteer to all clinic visits or can answer questions over the phone
Ron Petersen, M.D., Ph.D., is the Director of the Mayo Clinic's Alzheimer’s Disease Research Center and the Co-Director of the Clinical Core Alzheimer’s Disease Neuroimaging Initiative. Susan Molchan, M.D., is the Program Director for the ADNI study at the National Institute on Aging at the National Institutes of Health. Dr. Petersen, the first physician to diagnose former President Reagan’s Alzheimer’s disease, and Dr. Molchan talk about the study and its importance in potentially stopping the progression of Alzheimer's disease.
Ann Hedreen is a Seattle-based filmmaker who has produced “Quick Brown Fox,” the story of her mother’s struggle with Alzheimer’s disease. Knowing that Alzheimer’s can run in families, Hedreen and her sister Caroline have participated in Alzheimer’s research studies. Hedreen speaks about the satisfaction of helping to fight the disease by becoming a study participant.
Disproportionate Risk for Hispanics:
The Hispanic population in America is disproportionately at risk for Alzheimer’s disease.
The following statistics detail this higher risk.
- 200,000 Hispanics are currently living with Alzheimer’s disease. (Alzheimer’s Association 2004 report “Alzheimer’s Disease Among the Hispanic Population”)
- Dementia often goes unrecognized and undiagnosed because cultural or language barriers may prevent people from seeking a diagnosis. (2003 Progress Report on Alzheimer’s Disease, U.S. DHHS)
- Hispanics are the fastest growing population in the country, and the minority group that will have the largest older American population. (Alzheimer’s Association 2004 report “Alzheimer’s Disease Among the Hispanic Population”)
- Because Hispanics will have so many older Americans, it is the minority group at the highest risk for Alzheimer’s disease. (Alzheimer’s Association 2004 report “Alzheimer’s Disease Among the Hispanic Population”)
- By 2050, 1.3 million Hispanic older Americans are expected to suffer from this progressive, irreversible brain disorder with no known cause or cure. (Alzheimer’s Association 2004 report “Alzheimer’s Disease Among the Hispanic Population”)
Sound Bites:
Ronald Petersen, M.D., Ph.D.
Co-Director of the Clinical Core Alzheimer’s Disease Neuroimaging Initiative
Director of the Alzheimer’s Disease Research Center
Mayo Clinic
- “The Alzheimer’s Disease Neuroimaging Initiative is designed to see if imaging markers or biomarkers meaning tests of blood or cerebrospinal fluid will help us make the diagnosis of Alzheimer’s disease at an earlier stage and most importantly allow us to follow potential treatments as the disease progresses.”
- “Ultimately, we’d like to prevent Alzheimer’s disease and it may take a combination of neuroimaging tests and biomarkers that may in fact determine who is at risk for developing Alzheimer’s disease in the future. Then, if we develop effective therapies that would prevent the disease, we could intervene at an earlier stage.”
- “We hope that the neuroimaging markers and the biomarkers will be complementary and by that I mean that they will add a different piece to the puzzle. The neuroimaging markers will give us a picture of the brain and brain function and the biomarkers will give us an index of the chemical nature of the brain and we hope that by putting these two pieces of information together that we’ll be able to track the disease more precisely.”
- “I think as bits and pieces of this disease process are better understood, we will in fact be able to make a significant inroad into the underlying disease process itself, treating it and perhaps in the near future preventing it.”
- “I think we are making significant progress in the disease such that I wouldn’t be surprised if in the next five to ten years we do develop treatments that actually work on the underlying disease process itself and the Alzheimer’s Disease Neuroimaging Initiative will likely contribute to the development of those treatments.”
- “We hope that by studying neuroimaging markers we will be able to see changes in the brain that are affected by the Alzheimer’s disease process. In particular, the memory areas of the brain tend to shrink early. We will also see chemical markers as they change in the brain as the disease progresses and these may become very useful markers in determining whether or not a drug is effective at treating the disease.”
- “. . . it’s a very slow, insidious process and one of the goals of this project is to try to pick up at the very earliest either neuroimaging or chemical markers in the brain that may in fact tell us who is likely to progress to Alzheimer’s disease in the future.”
Susan Molchan, M.D.
Alzheimer’s Disease Neuroimaging Initiative Project Officer
Program Director, Alzheimer’s Disease Clinical Trials Program
National Institute on Aging, National Institutes of Health
- “Well, the main focus of the study is to find biological markers or biomarkers for memory decline in Alzheimer’s disease, just like we can measure a cholesterol now to check people for their risk of heart disease, we hope to have something like that for memory problems. And when we have something like that, it’ll help us test the drugs that we have now in the pipeline much more quickly.”
- “There are specific areas within the hippocampus itself where cells are lost and that’s, that’s a concern. We all lose a little bit with age but when people are developing Alzheimer’s disease the rate of loss in that area of the brain is quite a bit faster.”
- “We might collect cerebral spinal fluid or blood and what we can measure in that are substances that indicate inflammation in the brain, for example, that we think might be associated with Alzheimer’s disease, other biochemicals that might be indicative of the breakdown of nerve cells.”
- “As someone is developing Alzheimer’s disease, for example, fluid collects in their brain as the brain tissue erodes essentially, so that’s one of the things that we look at is the ratio of healthy tissue to fluid in the brain as well as the size of specific structures like the hippocampus that has a lot to do with memory.”
- “Just as for heart disease we can measure cholesterol levels and tell if someone is at increased risk and if we have a drug that lowers cholesterol levels we know that’s going to decrease the risk of heart disease and stroke, we hope to have something similar to that for Alzheimer’s disease where we can measure something in the blood or the cerebrospinal fluid or by looking at a brain scan and telling early on whether a medicine or treatment is impacting the disease.”
Ann Hedreen
Filmmaker, Research Study Participant
- “I’m a mom myself and when one of my children is sick or has been hurt, my urgent need is to make them better and that’s what’s so frustrating about Alzheimer’s disease is that you feel this urgent need to make it better and you can’t.”
- “Participating in Alzheimer’s Disease research may not help my mom today or tomorrow but it may help my children, it may help my grandchildren, my own part may be tiny but we need as many participants as we can to bring the research to fruition and to make a difference for future generations and having spent 10 or 15 years of my adult life watching someone I love suffer from Alzheimer’s Disease it is really important to me to do what I can to help stop the progress of this disease.”
- “When I was talking to my daughter in particular I realized how deep her fear was of me getting Alzheimer’s disease and so that also became a compelling reason for me to participate in the research.”
- “If you take the big picture view of your life and think, OK, if I participate in research I am giving a few mornings a few days of my life to a cause that is so much greater than I am that could affect millions of people and is that not an incredibly valuable use of my time?”
- “Alzheimer’s disease is not an illness people want to talk about. It’s probably the illness that frightens most people more than any other because they so deeply fear losing their minds literally.”
- “I made Quick Brown Fox as a tribute to my mother but I also made the film because I wanted people to see how devastating this illness is and to understand how important it is that we support the research that might end Alzheimer’s disease.”
B-Roll Footage:
- Volunteer Undergoing Research Screening
- Researcher Examining Cerebrospinal Fluid
- Dr. Ronald Petersen Examining Brain Image
- Alzheimer’s Patient with Family Member
- Alzheimer’s Disease Neuroimaging Initiative Web site
- Animation from “Alzheimer’s Disease: Unraveling the Mystery” (courtesy of National Institute on Aging)
- Excerpt: “Quick Brown Fox”
For media inquiries about “Quick Brown Fox,” contact Cindy Kridle at 212-925-0606 ext. 360 or go to www.quickbrownfoxfilm.com.
Eligibility Requirements:
Researchers are looking for people who are between 55 and 90 years of age who:
- Are in good general health with no memory problems, OR
- Are in good general health but with memory problems or concerns, OR
- Have a diagnosis of early Alzheimer’s disease
End of B-roll Package
