5-18-2021
On May 15 of this year I wrote an
entry telling of the approval by PCORI of a three year, three site, $1.5
million PD Palliative Care clinical research grant request. The study is
called "How Can Palliative Care Help Parkinson's Disease Patients And
Their Family Caregivers". Once again, the sites for this study are
Denver, Edmonton, and San Francisco and 140 patients and caregivers are
expected to be recruited. I have organized a Patient/Caregiver Council
with nine members whose combined experience covers the full spectrum of
palliative care from diagnosis through death (to clarify, we were unable to
recruit a patient who had died, but we do have caregivers who have either lost
loved ones or are in end stage).
The plan is to hold an online
Kickoff conference August 28 with the research team which will meet in San
Francisco. The P/C Council will join remotely from Denver. The
Council will meet with Dr. Kluger on September 22 to discuss next steps and
make a presentation to the Highlands Ranch, Colorado PD support group to begin
to familiarize local patients and caregivers regarding this project and who may
be able to participate.
An additional development is that
there will be an International Conference on Palliative Care for Parkinson's in
Denver on October 3 & 4. This was made possible by funding from the
Parkinson Disease Foundation (PDF). Attending will be the research study
team from all three locations and the patient council, the Executive Director
of the Parkinson Association of the Rockies (PAR), the PDF Science Director,
and palliative care experts from around the world.
I know that everyone associated
with this study is very excited about the potential to improve patient and
caregiver quality of life by virtue of improvements to the existing system.
The patients and caregivers on the council, in particular, can see the
opportunity before us and are committed to providing input that will make a
difference in the lives of our PD brothers and sisters.
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