lower Parkinson’s risk, and now scientists
are testing their safety and efficacy.
Many trials require participants who
have been recently diagnosed and often
not yet treated with PD medications.
(Researchers refer to this as de novo
Parkinson’s.) Some studies do allow
people who are taking certain PD drugs,
and each trial sets specific criteria. With
many in the early years of PD keeping
a low profile or unaware of studies that
need volunteers, though, these trials often
struggle to enroll enough participants.
Even so, trials of disease-modifying
therapies aren’t right for everyone.
Because of the nature or severity of
symptoms, some people need to start
medication right away. Others don’t like
the idea of possibly receiving a placebo.
(Many trials are placebo-controlled,
meaning one group of participants takes
placebo for comparison to the group on
the investigational therapy.) Either way,
newly diagnosed people can still make
many valuable contributions to
PD research.
Treating Early Symptoms
People are diagnosed with Parkinson’s
based on the cardinal motor symptoms:
tremor, rigidity and slowness of
movement. Other non-motor symptoms,
such as depression and constipation,
can arise even before these movement
changes. There are many clinical studies
testing therapies for these symptoms —
both motor and non-motor. Some clinical
trials do not test new drugs.
Remember fact 2:
There Is a Study (or Several) for You.
For example, you could take part in an
exercise trial for fatigue or a study of
cognitive behavioral therapy for mood
changes. And not all trials in early
Parkinson’s require people who have
not yet started medication. A non-motor
symptom study, for example, may not
ask participants to change their motor
symptom medications.
Learning about Disease
Onset and Progression Knowing Your Options
Early On
People early in their Parkinson’s also
can teach scientists a lot about the
disease. We have much to learn about
why and how Parkinson’s starts, and
recently diagnosed volunteers can
help. Participating in a study over
time also allows researchers to study
how Parkinson’s progresses. This
information can help us learn how to
predict an individual’s disease course
and develop and test new treatments to
stop its progression. If you’ve recently been diagnosed
with PD, you may want to think about
the benefits and risks of research
participation and find out what
studies are available to you before you
start medication, particularly if your
symptoms are mild. You can then have
an informed, thoughtful discussion with
your doctor to help decide what’s best
for you.
Studies that help us learn about disease
onset and progression — and do not
test a new treatment — are called
observational studies, and they come
in many shapes and sizes. As part of
an observational study, you might
undergo a brain imaging scan to look for
changes that could diagnose and track
disease progression (i.e., biomarkers),
complete online questionnaires about
your symptoms to see how your disease
changes over time or fill out one-time
surveys to see if you’ve been exposed
to certain risk factors. Or, you may
give skin cells that scientists turn into
dopamine cells to study Parkinson’s “in
a dish” — another way to look at what
goes wrong in PD (and identify potential
drug targets).
Some observational studies need brain
tissue to help researchers understand
hows and whys of PD. While something
like brain donation may not cross your
mind until later in life or well into your
journey with Parkinson’s, people both
with and without PD can consider this at
any time. When brain tissue is coupled
with information on your symptoms and
disease experience, it is often even more
beneficial to researchers, so thinking
about this earlier rather than later is
important. (See “Donating Brain Tissue
to Research,” pg. 24.)
Remember fact 1:
Patients Are Key Research Partners.
Many physicians, especially if their
practice is geographically remote
from clinical trials, may not bring up
research participation. In a 2014 Harris
Poll conducted on behalf of MJFF
and pharmaceutical company AbbVie,
only one in 10 doctors said they talked
about research frequently with their
patients. Time constraints may prevent
these conversations, especially when
providers focus primarily on care as
opposed to research. Yet people with
Parkinson’s say they look to their
doctors for information on research
and opportunities to participate.
See “How Do You Get Involved in
Parkinson's Research?" pg. 15, for tips
on talking to your physician and
learning about available trials.
The key is knowing your options early on
so you can make an informed decision.
Early in the disease course — a time
that can be overwhelming — research
participation is a way many find they
are able to gain the upper hand on their
disease and make a difference.
Chapter 2 — Research Participation throughout Your Parkinson’s Journey
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