January is Alzheimer’s Awareness Month in Canada. Research for Alzheimer’s disease is limited by a lack of participation in clinical trials1. This post hopes to clarify and advocate for AD research.
Alzheimer’s disease (AD) is the most common form of dementia among the elderly. AD is associated with a reduction in brain size and a subsequent deterioration of memory and cognitive skills and a change to behavior and personality. AD is a degenerative disease meaning that it progressively gets worse with time.
Why Research is Vital
There is currently no cure for AD and our understanding of what causes the disease and how it can be prevented is unclear. Furthermore, current AD treatments only modestly reduce symptoms. The only way to find the unknowns of AD is through research. All treatments including AD drugs need to be extensively researched for safety and effectiveness in clinical trials before they can be used to treat the disease. Patient participation is necessary to improve our understanding of AD.
Why we need more participation: A note on sample size and generalizability
Without a good number of participants in clinical research (i.e. a low sample size), researchers cannot say for certain whether treatments will benefit patients. The reason for this is because there is always the possibility that any observed benefit is due to chance.
For example, if you tested a treatment on one patient you may observe a benefit, but it is possible that the patient’s improvement had nothing to do with the treatment itself (for example if the body suddenly decided to heal itself). When you test the same treatment on 100 patients and 95 of them show improvements, there is a lower probability that all 95 patients are improving for a reason unrelated to the treatment.
Therefore, a higher study sample size increases researchers’ ability to make conclusions about the effectiveness of treatments. This same concept applies when there are many studies examining the effectiveness of a treatment.
In most research studies, there is an underrepresentation of non-Caucasian participants and there usually isn’t an equal split of men and women. This limits what is known as the generalizability of a study since we do not know if results we see in men will generalize to women, for example. As a result, the participation of not only a large number of patients but patients of all ethnic groups and both sexes is very important. It is also important to include participants from various geographic locations which is why studies often have different sites.
How you can get involved
The first step in involvement is awareness. It is important to recognize the signs and symptoms of AD and to get educated on the facts. Share the conversation with your family and friends and help demystify clinical research participation and spread the word about its importance.
For more information, visit the Alzheimer’s Society of Canada.
Predictors of physician referral for patient recruitment to Alzheimer disease clinical trials. James E. Galvin, MD, MPH; Thomas M. Meuser, PhD; Linda Boise, PhD MPH; andCathleen M Connell, PhD. Alzheimer Dis Assoc Disord. 2009 ; 23(4): 352–356. doi:10.1097/WAD.0b013e31819e0cac.