Parkinson’s Disease Research at the NIH – Webinar notes Stanford PD Community Blog

In May, the American Parkinson Disease Association (APDA) hosted a webinar on Parkinson’s disease research at the National Institute of Health (NIH). The speaker was Dr. Walter Koroshetz, director of the NIH’s National Institute of Neurological Disorders and Strokes (NINDS).  Dr. Koroshetz reviewed what the $223 million investment into Parkinson’s Disease (PD) research funds. 

The NIH is part of the Accelerating Medicines Partnership for PD (AMP-PD) which is a $24 million private and public partnership with the goal of identifying and validating diagnostic, prognostic, and progression biomarkers. The project aims to harmonize clinical data across multiple cohorts and establish a knowledge platform to handle the existing genome sequencing. 

This webinar was part of the “Dr. Gilbert Hosts” series hosted by Dr. Rebecca Gilbert, the chief scientific officer at the American Parkinson Disease Association (APDA).

A recording of the webinar can be found at the APDA’s YouTube webpage here.

Please see below for notes on the May 7th webinar.


– Joëlle Kuehn

“Dr. Gilbert Hosts: Parkinson’s Disease Research at the NIH” – Webinar notes

Webinar Speaker: Dr. Walter Koroshetz, Director of the National Institute of Neurological Disorders and Strokes (NINDS)

Webinar Host: American Parkinson Disease Association

Webinar Date:  May 7, 2021 

Summary by Joëlle Kuehn, Stanford Parkinson’s Community Outreach

Major goals of PD research:

  • Prevent the disease
    • Identify earliest stages – autonomic, REM sleep, olfactory or gut dysfunction
    • Determine the environmental influences/causes
    • Determine if we can block the initial site of synucleinopathy: gut, nose
    • Test potential disease-modifying therapies in earliest stages of PD
  • Develop disease modifying therapies:
    • Identify biomarkers linked to progressive pathology to inform phase 2 trials
    • Identify genetic causes/influences and their molecular/cell biology mechanisms
    • Determine how to block spread of synuclein pathology.  If they can prevent the spread, they can prevent the progression of the disease.
    • Test potential therapies informed by clinical and lab biomarkers
  • Develop symptomatic therapies
    • Reduce symptoms people have that cause disability or stop them from doing the things they want to do
    • They are very effective in the early stages of the illness (such as using Sinemet)
    • Deep brain stimulation is helpful when medications start to be less effective or if patients have a hard time tolerating them
    • BRAIN Initiative: brain research for advancing innovative neurotechnologies – learning how circuits work

NIH investment in PD research:

  • Increasing steadily since 2016
  • In 2019 it was $223 Million
  • Within the NIH, many administering Institutes and centers support PD research such as:
    • National Institute of neurological Disorders and Stroke (NINDS)
    •  National Institute of Aging (NIA):
    • National Institute of Environmental Health Sciences (NIEHS)
      • $12 Million
      • NIEHS is involved because it is now known that environmental factors (not just genetics), such as pesticides affect PD.

NIH approach to synucleinopathy dementia research:

  • NIA leads the NIH Response to the National Alzheimer’s Project Act (NAPA) to address Alzheimer’s disease and Alzheimer’s disease-related dementias (AD/ADRD)
  • NINDS is the lead on Lewy Body dementia (LBD) and ADRD Summits for LBD-specific research
  • NINDS and NIA collaborate on LBD research by:
    • Sharing identical paylines for investigator- initiated LBD grants
    • Funding opportunity announcement (FOA) planning
  • AD/ADRD supplement program to expand the field
  • Frequent communication, including in person at least monthly
  • Summits
  • There is overlap of AD/ADRD funding with PD-specific funding as well
  • Biggest increases in spending from the NINDS

Programs to come:

  • Next generation sequencing in post mortem tissue from patients with PD
  • Mechanisms of selective vulnerability in LBD and FTD
  • Mechanisms of pathological spread of abnormal proteins in LBD and FTD
  • Connecting pre-mortem clinical information with post-mortem brain analysis in LBD
  • Treatments for LBD – exploratory clinical trials

Accelerating medicines partnership – PD (AMP-PD):

  • $24M+ private and public partnership to identify and validate diagnostic, prognostic, progression biomarkers
    • Improve clinical trial design, patient stratification, monitoring of disease progression
    • Contribute to the identification of new pathways for therapeutic development
  • Project aims:
    • Harmonize clinical data across multiple cohorts
    • Establish AMP-PD knowledge platform to handle existing whole genome sequencing
    • Utilize existing pipelines from ongoing large scale projects that harness collective data

Question & Answer:

Question: When will NIH increase current funding of $200M / year for PD, given that they spend $3 billion on HIV?

Answer: The $3B for HIV was mandated by Congress. We don’t have a mandate on PD. For PD, it depends on what grants come in, so the more grants come in, the more goes to PD. There are congressional funds ($3B) for dementia research, and there is overlap there with synucleinopathy.

Question: NIH’s ADRD focus includes Lewy body dementia, but not PD research outside of PD dementia. Since dementia is prevalent in PD, why does ADRD not encompass all PD basic research given that basic research about Lewy bodies in general or PD in general could also impact dementia?

Answer: He’s exactly right, that’s what happened. Any basic science work done on PD is relevant to LBD. The difference is what is relevant to lewy body dementia. People can say it’s relevant to PD that’s relevant to the dementia in PD that is relevant to lewy body disease and qualifies that way. A computer codes grants based on what they say, and classifies them into what’s called “related dementia”. It’s a lot harder to qualify if you are only looking at the motor symptoms of PD. 

Question: How do people with PD find out about clinical trials being conducted at the NIH about PD? 

Answer: All trials done in the US have to be registered under, so check there. NINDS has a page which links people to the clinical PD trials. The Michael J. Fox Foundation app has a trial finder. 90% of funding goes to universities, so check your local research universities that have websites for PD research. 

Question: What are your thoughts about requiring researchers to share results with participants or with the general public?

Answer: NIH has a data sharing policy, and it encourages data sharing for all research that we fund. For all our clinical trials we bring data in and make it available. Sometimes doctor’s aren’t good at communicating results but we’re trying to do it more. NIH funded research findings legally belong to the people or institution who got the funding. So if an institution finds something and they want Intellectual property, with a law that the NIH can’t do anything about it, but we encourage it. 

Question: Are there any opportunities for specific RFA’s in PD? Especially regarding astrocytes.

Answer: We always look at the science and try to identify gaps, and then fund research that can close that gap. Regarding astrocytes, it’s a big problem for many different diseases, so all the neurosciences got together and put together an RFA to look at that problem as a generic problem. Answers are coming but we don’t know where they’re coming from. 

Question: Is there NIH funding about research and COVID and neurological diseases?

Answer: At the beginning, there were reports of PD symptoms for people with COVID. We’ve now learned it’s not related, and the inflammatory response to the virus can cause damage inside the brain for symptoms of parkinsonism but it’s not PD. In terms of post-acute effects of COVID, we need to set up a study to see if it could increase or decrease risk of having PD 10 years from now. 

Question: Could any of the practices used in how quickly COVID vaccines were created be applied in PD?

Answer: It was an industry-academia-FDA all coming together and working on different components. I worked on developing therapies for those who were sick with COVID. It was impressive to see how quickly it got together. Clinical trials were formed very quickly. One lesson learned is that getting industry people together with academia people is very beneficial.

Question: When will the EPA finally ban paraquat and TCE which have proven links to PD, and does the NIH have any relationship with the EPA on influencing those types of decisions? 

Answer: The NIH can’t influence federal agencies; we’d lose our jobs. Our job is to do the research that creates the evidence that then informs the EPA on what to do as well as physicians. We don’t tell them what to do, we present the data and they develop the guidelines. The percentage of PD that can be explained by genetics is around 20%, that means 80% is environmental factors. In the NINDS we’re thinking of founding a new office just to focus on that problem of environmental factors. We want to work with the NIEHS to take epidemiology data and understand it at a neuroscience level to try to understand the science of how the environment leads to the synucleinopathy that causes PD. We can intervene with a drug or try to get it out of the environment.

Question: What are things we as a community can do to make our voices heard so that the national government knows about the importance of research into PD?

Answer: From my vantage point, the fields move forward because smart dedicated and passionate people enter the field. NINDS is not a great encouragement of people, we’re a federal agency and we’re boring, we review the grants and give the money out. You can be an advocate by trying to influence young people to try to study PD.

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