Tuesday, May 18, 2021

Palliative Care Clinical Research Study Taking Shape


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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