Did you ever wonder about clinical trials for Alzheimer’s? Your first question may be ‘What are Clinical Trials?’ Most people don’t know, so I’ll provide some high-level information and how to find clinical trials that may help you or a relative. Why would I participate in a Clinical Trial, you might ask? The answer is because clinical trials are necessary to determine if drugs perform as expected. That can include curing disease, easing the pain, being suitable to help bring relief to a medical condition, determining if the drugs are fit for human consumption, determining if the drug helps or harms people, as well as hashes out the side effects.
I was very interested in clinical trials for Early Onset Alzheimer’s, and you might want to be too, for yourself or even a loved one. But here’s what was critically important to me. I wanted to feel less like a lab rat and more like a patient looking for relief or a medical cure. I expect to be informed about the positive effects of the medication. I did not want to be sick from any clinical trial medications. I wanted to feel and find relief in whatever trial I decided to enter. That was my criteria.
The GOOD news is, at this moment: I don’t have dementia. According to the doctors, I do have Early Onset Alzheimer’s. Early Onset is defined as Alzheimer’s/dementia before the age of 65. At this time, I do not have full-blown forgetfulness, or any of the other severe Alzheimer’s symptoms, yet! But from experience, I can describe it as living in a black hole at times in which everything that goes on around you includes moderate forgetfulness and confusion. Certainly, enough to cause fright and a feeling of being out of control. So, what can we do?
One thing we can do is get involved in Clinical trials. Clinical Trials are research studies to evaluate a medical, surgical, or behavioral intervention to cure various diseases. Clinical Trials for Alzheimer’s are the primary way researchers find if a new treatment, drug, medical device (for example, a pacemaker) is safe and effective.
1. How To Find Early Onset Alzheimer’s Clinical Trials
Working in the pharmaceutical industry for 25+ years, I knew about clinical trials. Besides finding a cure for a particular condition, clinical trials determine benefits, side effects, and correct dosages. Finally, clinical trials also hash-out drug effectiveness (does it work like it’s supposed to work.)
That’s what is special about this blog post? Below you’ll find where you can locate clinical trials that might be of interest. Clinical trials are the route to finding a cure. If a drug is successful, it will help people live a longer life, and a person with Alzheimer’s retain their memory for years longer. Hopefully, these trials will eventually find that cure.
So yes, I’m very interested in ongoing clinical trials, and you might want to be too for yourself or even a loved one. But here’s what was critically important to me. 1) I wanted to feel “less like a lab rat and more like a patient, looking for medicines near the end of testing that help us live better lives without this awful void of forgetfulness, or 2) ultimately treatment that would stop the disease completely. Let’s dig in so you can find and understand clinical trials.
2. What Are Clinical Trials
This Clinical Trial “website” defines clinical trials “as research programs conducted with patients to evaluate a new medical treatment, drug or device.” The purpose of clinical trials is to find new and improved methods of treating, preventing, curing, and diagnosing diseases.”
Have you ever wondered who the people are that participate in clinical trials? Have you ever wondered how to find these trials and how to get involved? Did you ever know enough to consider trying one for yourself? Let’s talk about it and answer your questions. The essential items for you should be:
- What’s the right kind of clinical trial for you?
- What are the benefits for you if you got involved?
- Where do you look to find a clinical trial?
Well, these links below are directly from the National Institute of Alzheimer’s with an explained description below.
- What Are the Four Phases of Clinical Trials?
- Why Participate in a Clinical Trial
- Why Are Older and Diverse Participants Important in Clinical Research?
- What Happens When a Clinical Trial or Study Ends?
- Questions to Ask Before Participating in a Clinical Trial
2.1 Initial Testing
Initially, all drugs are first tested on animals to confirm the drug’s effectiveness, identify side effects, establish dosages, etc. When animal testing is complete, the drugs are tested on humans. The purpose of clinical trials is to find new and improved methods of treating, preventing, curing, and diagnosing different diseases.” These tests determine the success of the drug, dosages, side effects, effectiveness, and impact on humans *before* production. Here are short definitions for each phase of the trials, as described in the links above.
2.2 Trial Testing
By definition, “A clinical trial is a medical research study in which human subjects participate taking potential cures to evaluate the effects of those drugs.. It states the 4 phases below.
Phase I Trials: A small group of people takes the experimental drug for a specific time to determine safe dosages. A variety of people will receive different doses. Observation of how effective the drug is for the condition and side effects, if any, are evaluated and documented. Phase 1 trials may be blind studies. A blind study is where some participants will get the medication/drug. Others will get a placebo.
Based on the trial, some people will not know if they will get the real drug. All dosages and group participants are evaluated. Medical results are documented. If all goes well, the trial will move to the Phase II trial. The testing is an experimental treatment on a small group of often healthy people (20 to 80) to judge its safety and side effects and find the correct drug dosage.
Phase II trial: A larger group of people take the drug to determine safety and effectiveness.
Phase III trials: This stage verifies that the drug acts as intended on a much larger group of the population. There may be additional side effects which are reviewed, investigated, and examined.
Phase IV trials: The drug is approved and confirmed that the drug continues to work as expected. It identifies other additional side effects in a larger group of people. These studies may include thousands of people. Post-marketing studies evaluate the impact of the medication after the FDA approves it.
For Early Onset Alzheimer’s clinical trials, I was looking for a 3rd and 4th stage trial near enough to me in location to travel easily. I did not want to be in an early-stage trial (Stages 1 or 2) where a person might suffer many of the side effects of a new drug or get the placebo, which does nothing.
Inadvertently, I came across a trial at Manhattan Behavioral Medicine, PLLC in New York. I reached out to the Organization and left an email regarding my interest. The organization returned my call soon after. I was super excited as they wanted me to come to their facility and discuss the upcoming trial. We set an appointment. I was evaluated, tested, both cognitively and medically, and accepted as a candidate. I was super excited, however, it will be a 2nd stage trial that looks promising with little to no side effects. We were to start in July 2019, the trial was put on hold due to the Coronavirus. We are still in wait-mode, but the trial will re-start soon. I am waiting impatiently to get started!
3. Documenting My Thoughts On The Trial
I will keep a running blog of my experience to let you know what is happening in the trial, its effects on me, and the final results. I’ll give my personal opinion on how it is working or *not working.* Additionally, below are some of the best places to look if you find that you might be interested in a trial for yourself or a loved one.
4. Best Places To Look For Clinical Trials for Alzheimer’s
Private organizations have clinical trials, so you can search locally (newspapers or the National Institute of Aging have trials and can point you to those nearby. Trials can be of great benefit with a cure for Alzheimer’s. You can also check newspapers, your general practitioner, or your neurologists or regular physician. Internet searches in your local areas, including local hospitals, may have known clinical trials. Some places you may have to travel to another state, as I do. I live in NJ, but the clinical trial is in NY. Major cities nearby likely have trial facilities, organizations, and hospitals. You can also go on the Internet and do a Google search for ‘clinical trials near you.’ That’s actually how I found the above trial.
5. National Institute on Aging – Memory Centers
Finally, a place to look is The National Institute on Aging (NIC) Memory Centers. These Memory Centers are all over the United States focusing on Alzheimer’s, brain health, brain trauma, and other brain diseases. Not only do they have access to clinical trials, but they also provide testing to determine or confirm the diagnosis of Alzheimer’s (including Early Onset), brain diseases, medical help, access to social services, psychiatrists, and psychologists to assist you.
I found it to be a wonderful place with doctors and people who care, do not judge, and work hard to find a cure or comfort in daily life. The Memory Centers are not Care Providers like Nursing Homes, although one of your relatives or care providers should go with you. Below is a chart that displays the states that have these Memory Centers. Well worth the value, even if you have to travel to get there. They do take insurances. I go to the one in Philadelphia, New York, although I live in NJ. It’s well worth it. The doctors are sympathetic, caring, personable, intelligent (know their stuff), and everything they do is amazing! I left feeling like I was in good hands. Click HERE or below on the image to find a Research Memory Center. I found these to be awesome places with doctors and people who care, do not judge and work hard to find a cure or comfort in daily life. These Memory Centers have access to the latest clinical trials. Additionally, you can ask what are the best places to find CareGivers for your loved one.
I left feeling like I was in good hands. And when Covid hit, they immediately had video conferences with my doctor. It wasn’t rushed. He was as thorough as if I were in his office. Below is a map of the various locations of these Memory Centers in the US. Most are called National Institutes of Aging (NIH) and they are located all over the country. You can find the nearest one to you by clicking on this link.
Clinical Trials.gov – Get Involved!
If you are interested in finding a clinical trial near you, check out this additional information HERE. Or click on the title link. You can type in a ‘condition or disease’ and find a study of interest in http://www.clinicaltrials.gov. It will provide initial details for their associated trials currently being executed throughout the US, and all you have to do is reach out to a Memory Center if you’re interested. I suggest if you’re interested in meeting with these top-notch doctors that specialize in Alzheimer’s, set up an appointment early. There can be a long wait to get an appointment. I waited 3-4 months the first time, but it was worth the wait! Attentive, Sympathetic, Caring Doctors who specialize! It’s an awesome place to go!
6. Looking To Our Future
When the trial I was accepted in re-initiates, I will keep a running blog post of my personal experience with this Alzheimer’s trial from start to finish. I’ll keep you informed on my physical condition, side effects, thoughts (personal perspective), drug effects, and the final results. I hope you will follow and keep in touch. Pray for me and for all of us who suffer from this disease. Pray that a cure is in sight!
If you have any questions or want additional information, or want to know how it’s going, drop a comment below. In the meantime, grab a copy of my book, One More Thing, Before I Forget, A Resource Guide for Early Onset Alzheimer’s. It is my story and provides some phenomenal resources that I discovered that help me get through each day! It’s all about the things I learned, used, and need to continue to function well. These resources keep me ‘living’ without too much difficulty! I hope you find it helpful. There is no other book like this with these resources and Alzheimer’s information that you have ALL in One Place! Check out the resources.
The map below is directly from the NIH National Institute on Aging website. It includes all the cities in the U.S. that offer phenomenal information, doctors, clinical trials, etc. Click on the title below to take you to the map with links to each in your city or state area.
Browse the list of ADRCs by State below.
Clinical Trials.gov – Get Involved!
If you are interested in finding a clinical trial near you, check out this additional information HERE. You can type in a ‘condition or disease’ and find a study of interest in http://www.clinicaltrials.gov. It provides initial details for all types of trials currently being executed throughout the US and all you have to do is reach out if you’re interested and you will be evaluated for the trial.
7. Looking To Our Future
When the trial I was accepted in re-initiates, I will keep a running blog post of my personal experience with this Alzheimer’s trial from start to finish. I’ll keep you informed on my physical condition, side effects, my thoughts (personal perspective), drug effects, and the final results. I hope you will follow and keep in touch. Pray for me and for all of us who suffer from this disease. Pray that a cure is in sight!
If you have any questions, or if you want additional information or just want to know how it’s going, drop a comment below. In the meantime, grab a copy of my book, One More Thing, Before I Forget, A Resource Guide for Early Onset Alzheimer’s. My story provides some phenomenal resources that I discovered that help me get through each day! It’s all about the things I learned, used, and need to continue to function well. These resources keep me ‘living’ without too much difficulty! I hope you find it helpful. There is no other book like this with these resources and Alzheimer’s information that you have ALL in One Place!
God bless, take care, and be well.