by Pamela Leland, PhD, Executive Director
Today, 1 in 3 older adults die with either Alzheimer’s or another dementia-related disease. It is the 6th leading cause of death in the United States, each year killing more than breast cancer and prostate cancer combined.
With almost 6 million living with the disease today, the numbers are expected to grow to 14 million in the next 30 years. And the cost of Alzheimer’s and other dementias could rise as high as $1.1 trillion. Yes, that is trillion with a “T.”
Unless we find a cure.
Diseases are cured through research and we all know that research takes money. Many of us have probably donated to organizations that are attempting to cure heart disease, cancer or Alzheimer’s.
But research also needs human subjects. And all of us can be a part of finding a cure by participating in research projects and/or clinical trials.
I’ve seen the devastating impact of dementia – both professionally and in my own family. I’m not a medical doctor and I’ll never be involved in developing a cure for dementia.
I can, however, be a part of testing the effectiveness of different interventions. So last week, I took 60 seconds and signed up with the Penn Memory Center Brain Health Research Registry.
I agreed to become a human guinea pig. And I would encourage you to do the same.
There are some unfortunate misconceptions about joining research or clinical trials that can scare people away from signing up. Here are the facts:
Being involved in research could be as simple as answering questions to allowing your medical records to be reviewed. It could also involve being exposed to new and emerging medications or treatments.
Your confidentiality will be preserved.
You will be fully informed about the project before you have to make a decision. Being fully informed means that you will be told the following:
- Why the study is being done.
- Your option to withdraw without penalty or consequence.
- What will be expected of you.
- What will be done to you for research purposes.
- How long the study will last.
- The potential consequences – both positive and negative – of participation.
You will also be given the opportunity to ask questions before making a decision. This is called Informed Consent.
There are protections in place for those who volunteer to participate in a research study. There are federal and state laws that researchers must follow. Each sponsoring institution is also required to have Institutional Review Boards (IRBs) to review and approve specific projects.
Finally – and significantly – you don’t have to be sick to participate in a research project. Researchers need healthy people too!
The decision to participate in a research project can be significant. You will want to spend time learning about the particular study, asking your questions and considering the implications of your participation. But it can be well worth the time and effort that might be required given the possibility of contributing to a cure.
But your participation is dependent on raising your hand and saying, “Here I am. I will help.”
Will you join me?
The web-site for the Penn Memory Center Brain Health Registry is https://pennmemorycenter.org/brain-health-research-registry/
Printed in the Daily Local News on Wednesday, February 6, 2019.