In August 2020, three Parkinson’s organizations hosted a virtual summer symposium.  We at Stanford Parkinson’s Community Outreach recently listened to each of the three sessions and are sharing our notes.

In August 2020, three Parkinson’s organizations hosted a virtual summer symposium.  We at Stanford Parkinson’s Community Outreach recently listened to the three talks and are sharing our notes. The notes here are from the “Engaging People with Parkinson’s in Research” talk by Karlin Schroeder, senior director of community engagement with the Parkinson’s Foundation. She leads the Parkinson’s advocates in research across the country, and was joined by some of her advocates. She spoke of the benefits of participating in research, such as helping the Parkinson’s community and a chance to get early access to treatment, as well as discussing how research is being improved. She also spoke of the importance of getting involved because clinical trials are a long process and the more people who get involved can speed up the process. There are many questions to ask prior to starting an clinical trial, such as how your health is protected or other risks and benefits, which Karlin explained in greater detail. She also emphasized that informed consent is important and is a conversation with the clinical trial team, not just a document to ensure you fully understand the research and the role before deciding to participate. 

The webinar was recorded and can be viewed here.

This session begins at 1:46:17 and ends at 2:24:53

See extensive notes on the August 20, 2020 webinar below.

Regards,

– Joëlle Kuehn

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“Research & Advocacy – Engaging People with Parkinson’s in Research” Notes: 

Speaker: Karlin Schroeder, Senior Director of Community Engagement, Parkinson’s Foundation

Advocates: Dave, Kim, Libby, Liz 

Hosts: APDA Minnesota Chapter, Parkinson’s Foundation Minnesota and the Dakotas, Udall Center, University of Minnesota

Date: August 20th, 2020

Summary by Joëlle Kuehn, Stanford Parkinson’s Community Outreach

Interesting fact: Less than 10% of people with Parkinson’s take part in research

Types of Research: 

• Observational: 
  • What is happening with your Parkinsons?
  • How you live with Parkinson’s and the progression of the disease.
  • Monitored over time.
  • Use screening tests on people to look for biomarkers
• Interventional/Therapeutic:
  • A substance (drug, gene) or action (surgery, exercise, nutritional supplements), are given to see if and how it changes the course of the disease
  • Ex: tests medications to treat non-motor symptoms of Parkinson’s Disease

Importance of getting involved: 

• Clinical trials take a long time. You have to do early studies and animal studies first. There are different phases, to see if it’s safe or works in the body. 
• This can take 15 years to test a medication and get it approved.
• The more people that can get involved will speed up the process
• Research might not help people today, but it will help people in the future

Why should I participate: 

• To help the Parkinson’s community
• Contribute to diversity in research (currently, they are often white, wealthy men, the more diversity there is, the better it reflects actual populations)
• A way to stop the progression of PD (by using experimental drugs that may work!)
• A cure
• A chance to get early access to top-quality medical attention and successful therapies
• Better ways to treat and manage the disease with fewer side effects. 
• It’s a great way to stay involved

Healthy volunteers are needed too – it contributes to overall understanding of the disease. 

Questions to ask before deciding to participate:

• What do I need to know about the study?
• Are there other treatment options I should consider?
• What are the risks and benefits of this study?
• How will my health and safety be protected?
• What happens at the end of the study?
• How will post-study information be shared with me?

You will have time to sit down with the study team and discuss these!

Informed consent:

• A conversation, not just a document
• Ensures you fully understand the research and your role before deciding to participate
• Is a process throughout the trial
• Is not a contract – you can stop your participation, but we recommend to stay the whole time otherwise we lose data. It’s good to know information early to prevent issues coming up later.

There are now also some virtual studies, to accommodate COVID-19, and to make it easier to participate in. 

How we are improving research:

• Defining unmet needs and community priorities
• Deciding what is studied and how it is studied
• Collaborating on collecting and analyzing data
• Assessing study burden
• Improving informed Consent

To get involved in Research or get connected to Research Advocates please contact:

Karlin Schroeder, Senior Director of Community Engagement

• Phone: 646-388-7641
• Email

Question & Answer:
with Karlin and research advocates Dave, Kim, Libby, Liz

Question: Favorite part of participating in research study?

Answer:
Dave: Talking to and getting to know the research coordinator and understand what the study is about. 

Liz: The learning about the disease and things that give me hope

Kim and Libby: Getting to meet the researchers, being on a first name basis with physicians. You have access to caregivers on a different level. 

Karlin: Getting to see the results or progress updates and knowing that I was a part of it. 

Question: What are things you worry about most when volunteering for a study? What are some things that could be adapted or changed to make you more comfortable?

Answer:
Liz: Knowledge and communication and knowing that the study has been well vetted and the drug has been tested on rats and I am not the first, that people have been careful. 

Kim: The research groups do whatever they can to get you into a study and stay in a study so they get good results. They’ve even come to houses to pick up and drop off for testing. After a full tiring day of testing, having that ride both ways is enabling. Stay in a program and complete it. They do whatever they can to make you comfortable. 

Question: Many studies want someone who isn’t receiving treatment yet. Are there options for those who have already started a medication?

Answer: 
Karlin: Yes there are studies out there where you can remain on the medication you are already on. There is sometimes also the option to start your treatment during the course of the trial. Sometimes if we see people can’t we question our process and see if it is possible to have participants stay on treatment. Some trials also don’t involve medications (ex. Exercise trial), so it wouldn’t impact it. 

Dave: Sometimes they’ve asked me to stay off for 12-24 hours prior but I couldn’t do that so there are studies I have declined because there was something like stopping to take medication. 

Question: If someone is considering participating, what is your top piece of advice to encourage them to participate?

Answer: 
Kim and Libby: If we don’t participate in research, it’s not going to get done, so we have to do what we can do. The research process has always been enjoyable and positive one. 

Dave: There is a misconception that research studies are very technical and difficult to complete, but the one’s I’ve been involved with are straightforward. You can sometimes use your closest facilities if the study facility is far away. It’s not a matter of pass or fail, it’s a matter of collecting data to find a better quality of life or a cure. 

Liz: Each one of us is a significant piece of finding that answer or breakthrough that could be right around the corner, every person who joins can contribute to that happening sooner.