Tag Archives: clinical research learning institute

Patient Engagement Works: Lessons from the Learning Institute Year Eight

Two weeks ago, I sat in the back of a conference room in New Jersey, watching events unfold at PDF’s most recent Parkinson’s Advocates in Research Learning Institute, as I have for the past seven years. For the eighth year in a row, we were prepping a group of people with PD and care partners to understand the research process and how they can pair up with researchers to improve it. As I sat there, planning details for the next day and ways to make the training better, I looked up and it hit me – it is working.

Join Me in Changing Research: A Review of PDF’s Learning Institute

In this Q&A, Phil Myers shares his thoughts on volunteering as a PDF Research Advocate, and provides tips for individuals thinking of applying for a spot at our upcoming training for new advocates. Phil and his fellow 230 Research Advocates are part of PDF’s Parkinson’s Advocates in Research program. Q. Why did you apply to the PDF Learning Institute? A. A few years ago, my wife had passed away with a parkinsonism and I had recently been diagnosed with Parkinson’s disease. These experiences fueled my desire to be involved in medical research. But I didn’t have a medical background, so… read more Read More

PAIRing up for Research: The Importance of Saying Thank You

Last week, we were excited to see a great example of pairing up (the slogan for our Parkinson’s Advocates in Research, or “PAIR” program) at Vanderbilt University Medical Center (VUMC). In an article entitled, “Events honor early patients of novel Parkinson’s study,” VUMC reports on their study of deep brain stimulation surgery as a treatment for early stage Parkinson’s. DBS is approved by the FDA as a treatment for mid stage Parkinson’s, but not for those with earlier stage PD. We were impressed to see how VUMC thanked their volunteers, all people with Parkinson’s, who made the study possible. As… read more Read More

Protecting the People Who Test New Parkinson’s Treatments

We all want better treatments for Parkinson’s.  Tuesday’s announcement that one of PDF’s Research Centers – Rush University Medical Center, in Chicago, IL – received full accreditation from The Association for the Accreditation of Human Research Protection Programs, Inc. (AAHRPP) is another step in the right direction. Fewer than 200 institutions around the country are fully or partially accredited by AAHRPP. Before any new treatment, for PD or another condition, is approved it must first be tested in people – in clinical research studies – to ensure it is safe and effective.  The AAHRPP accreditation means that Rush is following… read more Read More

Grant Review at PDF

Today is a big day for many at PDF — it is our annual grant review. Of course, those most affected by what goes on in the big conference room will not be there. There are two groups who depend on tomorrow’s outcome: the scientists who have given us their best ideas for our scientific advisors to judge and the people who live every day with Parkinson’s and are counting on these great ideas to make a difference in their disease and their lives. I am confident that the team of scientists helping — members of our scientific advisory board… read more Read More

Notes from AAN 2011 Part I: PDF News

This week the researchers and clinicians who treat Parkinson’s and a host of other neurological diseases are gathering at the annual meeting of the American Academy of Neurology in Hawaii. Here they will share new information on the science and care of Parkinson’s. PDF’s Director of Research Programs, James Beck, Ph.D., is on the ground in Hawaii and has been sending us some updates on some of the happenings at this meeting. Here are some PDF-related highlights he has sent along: First, AAN accepted a submission from PDF as part of its competitive poster session, which Dr. Beck has shown… read more Read More