Karen Raphael

USA

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 two years ago.

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 through applying the research literature on exercise to my own life, and I want to encourage others to do the same, safely and sanely. I want to help others to be better 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 submitting grants to fund research on pain in PD.

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

It will be my first time attending. I think it is critical for PwP to have an opportunity to directly interact with research scientists and clinicians, so that our multiple realities and priorities are reflected in both research and clinical efforts. Personally, since I am an experienced clinical researcher, I hope to help ‘raise the bar’ a bit higher on the current level of research advocacy by PwP during my own presentation at WPC.

I will also be sharing my research knowledge about pain as it may (or may not) translate to pain in PwP. As someone who has spent decades conducted grant-funded research on clinical pain conditions, I hope to challenge current research on pain in PD to reflect multiple types and distinct mechanisms that may be underlying the experience of pain in PwP.

I am thrilled to have the opportunity to directly meet and talk with research scientists whose work I have devoured over the past few years.

  • Publication/commentary critiquing meta-analysis on pain in PD
  • 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
  • Future presenter at WPC 2019 (World Parkinson Congress) Kyoto, to help current research advocates ‘raise the bar’ on their level of advocacy

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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