Karen Raphael


Age diagnosed: 55

Specialist interest: Clinical trials, epidemiological research design, Regulation & Industry

Trained as a PhD-level psychologist and epidemiologist, I am a professor and clinical/epidemiological research scientist. My Dad had PD and now I share that experience with him, even after he died from PD complications several years ago. I have lived with PD for over a decade and experienced symptoms even in my mid-20’s.

My current dilemma is now “How do I help most?”. I love translating the PD research literature to help others living with PD. I love debunking nonsense. My own motor symptoms have remitted for the most part through applying the research literature on exercise to my own life. Vigorous endurance exercise is part of my daily medicine. I want to encourage others to learn how to do the same, safely and sanely. I want to help others to become stronger research advocates and to improve the clinical trials process to ensure that trials are designed in a way that asks the right questions for the right PwP. I am considering drawing on my 30+ years of experience in clinical pain research to start studying pain in PD. Recently, I have been seriously considering retiring, so that I have more time and energy to devote to PD Advocacy. Having a full-time job as a professor and research scientist can get in the way just a bit!

What are your thoughts on the World Parkinson Congress (WPC) 2019?

It was my first time attending WPC. What an extraordinary experience! Since I seem to be one of the few PwP who has had the good fortune to design and conduct my own clinical research studies for decades, I offered pre-session workshops designed to provide a taste of how we need to learn to ‘raise the bar’ on the current level of research advocacy by PwP. Multipronged therapeutic approaches; patient-oriented outcome assessments; appropriate statistical testing; careful consideration of exclusion and inclusion criteria; thinking about how the choice of control treatments define the clinical question being posed; encouraging evaluation of treatments such as supplements used frequently by PwP but for which clinical trials are lacking rather than trialing just treatments that are effective (so far only) in rodents; these are among the many issues that demand greater attention by PD research advocates. Yes, we can help to make a protocol more tolerable for PwP to participate and for recruitment to be more effective, but we can advocate for much more than that.

I also spent a session in Kyoto talking about the different types of pain in PD and that not all pain experienced by PwP is “PD pain.” Different mechanisms demand different treatment approaches.

More than anything, I was thrilled to have the opportunity to meet and talk with research scientists whose work I have devoured over the past few years, and to meet many cyber-friends from around the world, hugging them in real time.

• Publication/commentary critiquing meta-analysis on pain in PD

• Co-author on several other PD-related publications, with additional publications in preparation

• Administrator and frequent contributor for the Parkinson’s Research Interest Group on Facebook

• Participant/observer in Linked Clinical Trials Meeting in Grand Rapids, Michigan 2018 and 2019

• Presenter in multiple sessions at WPC 2019 (World Parkinson Congress) Kyoto

• Future panelist for an upcoming CPT webinar on exercise in PD

What is the one thing that you want to change in the world?

Redistribution of resources toward health care (and not just for PD).

What advice would you give to others who are keen to get involved in Parkinson’s research?

Attend PD meetings of all kind. Speak up. Remember that there’s no such thing as a dumb question. Participate in PD research studies and share your experience.

There is not ‘a piece of reading’ I would specifically recommend, because it depends upon the specific PD research issue of interest.

(1) Read all you can, looking first at the websites of major PD organizations. Avoid websites which fail to cite peer-reviewed research.

(2) If you have a scientific background and/or are willing to challenge yourself, try to read even those scientific articles that you think are ‘too hard.’ It gets easier over time.

(3) If you want to know about studies being conducted for PD, search https://clinicaltrials.gov/ or sign up to be notified about trials in your area for which you might be eligible, from the Michael J Fox Foundation: https://foxtrialfinder.michaeljfox.org/.

Two top blogs for those new to PD research who want to learn –in English– about ongoing research are:

(a) CPT’s own Simon Stott’s blog

(b) Independent research advocate and person with YOPD Benjamin Stetcher’s blog


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