How Do You Get Involved
in Parkinson’s Research?
Thinking about volunteering for a clinical study means weighing the
potential benefits and risks, just as you would when starting a new
medication or considering a surgical procedure to manage your
Parkinson’s symptoms. With every decision you make in life, you
want to make sure the pros outnumber cons.
Taking part in research can be
empowering and provide access to
Parkinson’s experts and the latest
treatments. But it also can expose you to
risk, side effects or discomfort. Discuss
your thoughts on research with your
family and care partner, and talk to the
trial team about the requirements for a
specific study. Your doctor can help you
decide which research is right for your
individual situation. process, you will learn about specific
risks of particular trials. Safeguards are
in place to minimize serious side effects,
but these may be a possibility in some
studies. Other potential cons of research
participation may include:
Weigh Potential Benefits
and Risks + + Costs that are not covered by your
insurance company, or
You may find it helpful to write out
general pros and cons as well as those
specific to the study. People with
Parkinson’s often say that the pros of
research participation include:
+ + Playing an active role in your care,
+ + Advancing science for yourself, others
in the Parkinson’s community and
future generations,
+ + Accessing promising new treatments
that aren’t available outside of
clinical research,
+ + Partnering with Parkinson’s
experts, often at leading health
care facilities, and
+ + Being at the forefront of the latest
treatments and research.
In general, research risks typically
involve potential side effects or adverse
events related to trials that test new
therapies. During the informed consent
+ + Lack of benefit from an
investigational treatment,
+ + Not getting to choose the group
(treatment or placebo) you’re assigned
to in a randomized study,
+ + Increased visits to a clinic or hospital.
If the time and effort associated with
certain trials is a deterrent, remember
that there are many trials requiring
varying levels of commitment. An
online trial or one that requires just a
single in-person visit may be a better fit.
Learn about
Parkinson’s Trials
As you consider your involvement, look
into the trials that need volunteers.
There’s a lot you can do to educate
yourself about available trials:
Remember fact 6:
There Are Many Ways to Find
Trials and Studies.
+ + Talk to your doctor about clinical
research they or their colleagues may
be leading,
+ + Ask others in the Parkinson’s
community who have participated in
trials about their experiences,
+ + Sign up for Fox Trial Finder
(foxtrialfinder.org), MJFF’s online
tool that matches eligible volunteers to
recruiting clinical trials,
+ + Visit a local clinical trial fair, where you
can learn more about different types of
trials in your area,
+ + Search www.clinicaltrials.gov, a site
maintained by the National Institutes
of Health that holds information on
clinical trials and studies in all 50 states
and more than 200 countries, and
+ + Check out MJFF’s and other
Parkinson’s organizations’ websites
and resources.
Talking to Your Doctor
Your doctor knows your medical
situation best, so it’s important to get
his or her take on research and how you
can volunteer. Some questions you may
want to discuss with your physician, in
addition to the trial team:
+ + Can I keep my own health
care provider?
The short answer is: yes. Although
you will have appointments with the
clinical research team in the context
of the trial, this is not the same as your
usual med ical care. The Parkinson’s
doctors you may see as part of a clinical
trial will not make treatment decisions
Chapter 1 — Clinical Research Basics
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