Back in December 2019 I posted about the various medical studies that I was participating in (see here for details). But things have changed since then and I thought it was about time for me to post an update.
C-diff Study
I began participating in this study in the beginning of 2018
following my hospitalization for sepsis. This study involved getting three
injections of either a vaccine or a placebo (saline solution) and then being
followed for three years to see if contracted C-diff. I checked in monthly on
an electronic diary. The study was supposed to last until September 2020.
However, as that date was approaching those running the study extended it for
another year until September 2021 (I think because it took so long to recruit
the 17,000 people in the study that they needed the later participants to
finish their three-year participation). But as my three years had been reached,
they asked me to return my electronic diary. I’m not sure if I will find out if
I was given the vaccine or the placebo after the study ends next month, but at
this point I don’t suppose it really matters.
Alzheimer’s Study #1 – Aging Brain Cohort
As I noted in the above posting, I’ve been participating in
the ABC study since the fall of 2019. This test involves a physical and mental
evaluation, a brain MRI, a PET scan and/or a lumbar puncture. The evaluation is
repeated every year. They also ask you to consider donating your brain when you
pass away.
In November of 2019, I had the lumbar puncture. After posting
about it, I was interviewed by the Penn Memory Center and they featured me in
their monthly newsletter! You can read the article and see pictures of me and
my family here.
When COVID hit in 2020, the schedule for participation was
significantly impacted. The annual evaluation was conducted remotely and some
portions that could not be done that way were eliminated. However, as COVID
restrictions relaxed this spring, I was able to travel down to Philadelphia for
my brain MRI. Lying still inside the machine for over an hour was an
interesting experience. But before I left the lab, I was able to see some of
the images. I can now confirm that my brain cavity is NOT empty and there
really is something in there!
I have also now signed the paperwork for donating my brain
(now that I know that it’s actually in there!). I had agreed to take the PET
scan this fall, but that is now on hold due to my pending participation in the
AHEAD study (see more on this below).
Alzheimer’s Study #2 – APT Webstudy
In March 2020, I was informed about the availability of a
new study called the Alzheimer Prevention Trials (APT) Webstudy. This is purely
on online study that is aimed at developing a large online group of individuals
who may be at higher risk for developing Alzheimer’s dementia, and who will
allow their memory and thinking test results to be tracked over time. This study
is not very time consuming and consists of signing on to an application every
three months for about an hour or so. They give you a series of “tests”
designed to stretch your memory and thinking skills and see if they change over
time. The tests are all playing card based and require you to answer yes/no as
quickly as you can. Tests include responding yes when they flip over a red card
and no when they flip over a black card; responding yes when the card flipped
over is the same as the last one and no when it is not the same; responding yes
when you have seen that card before in the test and no when you have not seen
it. This latter one is especially challenging as the number of cards you have
to remember gets higher and higher as the test progresses!
My scores have remained nearly similar over the past year+
which is a good indication that my thinking/memory skills are not yet impacted.
Alzheimer’s Study #3 – Memory and decision-making
Last month I was contacted about another study – a one-time
commitment of only 2 hours. I initially declined as it would have required travel
to Philadelphia. But then they offered to have me participate via a remote link
so I agreed. In this test you learn about decisions made by other people and
then make decisions of your own. It’s looking for how other people’s opinions
influence our own decision making (the concern being that when people find out
if they or a family member has dementia how does that influence them). My
participation is scheduled for later this month, so I can’t comment much more
at this time, but I’m looking forward to it.
Alzheimer’s Study #4 – AHEAD
Because of my involvement in the APT Webstudy (#2 above), back
in January I was contacted by one of the clinical research coordinators at
UPenn asking if I would be interested in participation in a study called TRC-PAD
(Trial Ready Cohort for the Prevention of Alzheimer’s Dementia). This study if
for individuals over 50 who may be at increased risk and is to develop a pool
of individuals who can get prescreened and are thus ready when drug studies are
initiated. Since these are not just tests, but would involve receiving actual
injections of trial drugs (much like the C-Diff study above), it was not
something that I took lightly and so my wife and I had to have a more serious
discussion about it.
As the research coordinator and I had several back-and-forth
emails over the following months, we (my wife and I) agreed to my
participation. But meanwhile, a study was being kicked off for which they would
be looking for participants and I could just skip the TRC-PAD and move directly
into this new study. It was known as AHEAD (see https://www.aheadstudy.org/ for more
details). None of the initial participants in TRC-PAD had been interested in
this study, so this was definitely new ground for me.
The drug being studied is designed to remove/eliminate the
amyloid plaques in the brain before people have symptoms of Alzheimer’s. This is
a phase three study, meaning the safety of the drug has already been evaluated.
There is an initial PET scan to determine what level of amyloid plaque I
already have. Depending on the level It requires either (1) bi-weekly IV
injections every two weeks for the first two years and then every four weeks
for another two years or (2) monthly IV injections for the full four years. The
commitment of having to drive to Philly that often was a bit more than I was
willing to take on, but they are working on having a home infusion service
(having a nurse visit) and with that change I was willing to participate.
We are still working at setting things up for this. I will
still have several trips to Philly at the beginning – for a PET scan as well as
blood work and the first few IV sessions, but that’s reasonable. As I mentioned
above in #1, this AHEAD study will supersede the ABC study and so we have put
the PET scan needed for that on hold pending getting everything set up for this
new, much more intense, study.
Summary
As I mentioned in my earlier posting,
I am committed to participation in these Alzheimer’s studies because of the dementia
in my own family (my father and his mother). I have also seen the impact of it
on people like Dr. Cook (our former family doctor and a member of our church)
and others in my family as well as our church family. This AHEAD study is going
to be taking things to another level with getting at least monthly IV
injections for four years. But I still feel the same way that the opportunity
to help others in the future is something that more people should consider.
When I mentioned this to our current family doctor last
year, she was also impacted by my commitment – so much so that she also signed
up to participate in a study related to an autoimmune condition which she
suffers from. Usually, it’s the doctor giving advice to patients, so when she
later told me how I had influenced her to do the same I was surprised. One
never knows what influence one has.
Have you ever considered participating in a medical study?
If not, why not!
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