Studying Later-Stage
Symptoms
Many aspects of Parkinson’s disease
(PD) cannot be studied until later in the
disease course. Certain symptoms —
dementia, gait and balance issues, and
dyskinesia (uncontrolled movements),
for example — mainly appear in people
with moderate or advancing Parkinson’s
disease. Studies to better understand
these features of PD and test treatments
to ease their impact (e.g., drugs, exercise,
physical therapy) need volunteers who
experience them.
Observational studies, too, may call for
people with long-established disease.
Fox Insight, MJFF’s online study, is
capturing data on the lived experience
of Parkinson’s at every stage. Sharing
with researchers what life is like
with advancing PD can help allocate
resources, design studies and advocate
for new treatments.
Certain trials evaluating disease-
modifying therapies also are open
to people who have had Parkinson’s
for several years and are taking
PD medications.
Participation after DBS and
Other Surgical Procedures
A commonly asked question is, “Can I
still participate in research if I’ve had
deep brain stimulation (DBS)?” The
short answer is yes — there is a study
for everyone. However, some trials may
not include people who have had DBS
or other surgical procedures on the
brain, or who take certain medications.
Many, though, welcome people who
have undergone or are using a number
of treatments. Review the inclusion
and exclusion criteria of a study to see
if you may be eligible, and speak with
your doctor about the effects of research
participation on your care regimen.
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Calling on Your Loved Ones
With later-stage Parkinson’s may come
limitations and a greater need for support
and assistance from others. Volunteering
for clinical research may not be a
priority. Care partners also may not
be aware of the range of opportunities
for participating. In a 2014 Harris Poll
survey, only 41 percent of those caring
for someone with advancing PD said they
would be likely to encourage the patient
to participate in research.
It can take time and effort for a care
partner to help their loved one volunteer.
Consider, though, that studies come
with varied levels of commitment and
helpful resources. Care partners could
help complete an online survey. And
some study sites are piloting the use
of rideshare services such as Lyft to
transport volunteers to site visits.
When deciding to participate in a trial
or study, your care partner can help
evaluate the costs and benefits. It may
take time and energy to volunteer for a
trial, but that study could help test a new
treatment and offer more face time with
Parkinson’s experts. Keep in mind that
some research focuses on care partners’
needs too, so research participation can
extend beyond treating PD per se.
Remember fact 5:
Your Safety Is Top Priority.
Donating Brain Tissue
to Research
Researchers can learn much by studying
the brains of people who have lived with
Parkinson’s disease. For example, they
analyze brain tissue to understand the
effects of Parkinson’s and where to target
treatments. There are a number of brain
donation programs around the country.
Some require advance consent and visits
to a study site for periodic assessments.
Navigating Clinical Trials: A Guide for Parkinson’s Patients and Families
You should discuss this decision with
your loved ones, and ensure that they
know your intentions. Expressing your
wishes to your family now can help
them plan for and coordinate your
donation. Your doctor also can help
answer questions and connect you with
a donation program. You can learn more
about the National Institutes of Health
program at neurobiobank.nih.gov.