“Normal Controls,” Extraordinary People
As people go, normal controls are probably a few paces ahead of “normal.” In fact, they are quite extraordinary. They give their time, effort, and often blood and other specimens, to help us understand a disease that does not specifically affect them. Why do they do this? They know that without cognitively healthy participants in research, care for cognitively impaired persons cannot advance.
Participation in the research necessary to improve the way we diagnose and treat Alzheimer’s Disease must involve not only persons who have the disease, but also those who don’t. In science terminology, such people are called “normal controls.” In fact, they are quite extraordinary. They’re extraordinary because they give their time, effort, and often blood or other specimens, to help us understand a disease that does not personally affect them. And they do it because they know that without cognitively healthy people in research, care for cognitively impaired persons cannot advance.
The Research Role of Normal Controls
Dr. Jason Karlawish of our ADC explained “Many studies rely on the comparison of two or more different groups. In Alzheimer’s research, you need one group to show what kind of changes in brain function are simply part of normal aging, versus those that are abnormal and signs of disease.” Studies generally require an equal number of normal controls and impaired participants. Normal controls should resemble as much as possible key attributes of the cognitively impaired subjects. These include age, sex, race, ethnicity, physical health, and years of education. This is why it is so important that Alzheimer’s centers like Penn’s ADC build research partnerships with large numbers of diverse individuals who will take part in studies as a normal control.
Doing good “in minute particulars”
All research participation is an act of altruism. Normal controls understand that their personal participation in research improves the quality of research for persons with cognitive impairment, and advances the body of knowledge about Alzheimer’s. And they are willing to act on that understanding.
Getting to Know You . . .
What does a normal control actually do? At an initial ADC visit, and once a year thereafter, normal controls complete a short series of psychometric paper-and-pencil and verbal tests. They will also have a basic physical and neurological examination, and give blood and urine samples. Additionally, they will provide a comprehensive health history and extensive demographic information. All that information is sent to the federally funded NACC (National Alzheimer's Coordinating Center) database. NACC uses the data to facilitate collaborative research among the 29 Alzheimer's Disease Centers nationwide that are funded by the National Institute on Aging.
Do you need help to identify, find treatment for, or understand a memory problem in yourself, or a loved one? Are you interested in ways you can assist the progress of vital and exciting research, dedicated to improving the diagnosis and treatment of cognitive disorders, and maintaining a healthy brain? We invite all persons who need answers, and who want to personally help advance the nationwide effort to improve AD diagnosis, treatment, and prevention, to participate in our Penn Memory Center Research Cohort.
The Penn Alzheimer’s Disease Center’s Penn Memory Center provides comprehensive testing, evaluation, and the latest in treatment for persons over age 60 with cognitive disorders, Alzheimer’s Disease, and other forms of dementia. We’re a source for news about, and opportunities to participate in essential research. Our studies involve both individuals diagnosed with cognitive impairments, and individuals who are not impaired. We provide a resource center, to help support and educate patients and their families. A bi-lingual Latino staff serves the needs of Spanish-speaking patients and their families. for a Penn Memory Center appointment, please call 215-662-7810.