Insight into Parkinson’s 2020, Day 1, part 2 – Conference notes

Insight into Parkinson’s 2020, Day 1, part 2 – Conference notes

Insight 2020 is the largest online conference for people with Parkinson’s disease (PD), their caregivers, and those who work with the PD community. It took place this year on April 1-3, and covered a wide range of topics, from living positively to the latest PD research. We at Stanford Parkinson’s Community Outreach attended all three days of the virtual conference and took notes on some of the talks that seemed most interesting or relevant to our audience. Highlights from Day 1 of the conference are below. Due to length, we broke up the blog post into two parts for each day of the conference. This is Part 2 of the Day 1 summary.

To see the agenda for the full conference, visit the Insight 2020 event website here.

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Blocking harmful neuroinflammation to arrest neurodegeneration

Speaker: Prof. Matt Cooper, University of Queensland and CEO of Inflazome

Insight into Parkinson’s Conference, April 1, 2020

Notes by Lauren Stroshane, Stanford Parkinson’s Community Outreach

Our immune system uses special sensors to detect microbes or damaged tissues; one family of these sensors is called inflammasomes, which signal for inflammation to occur in response to an infection or harmful substance. Ordinarily, inflammation helps our body fight off foreign invaders. But when it continues long-term and becomes chronic, inflammation may contribute to the development of neurodegenerative disease, among other conditions.

Inzomelid (Inflazome) is a drug being developed by the pharmaceutical company Inflazome, of which the speaker, Dr. Cooper, is CEO. It targets neuroinflammation by inhibiting inflammasomes. So far, the drug is in Phase I trials to establish its safety and tolerability.

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People-powered research

Speaker: Annie Amjad, Parkinson’s UK

Insight into Parkinson’s Conference, April 1, 2020

Notes by Lauren Stroshane, Stanford Parkinson’s Community Outreach

The speaker defined patient and public involvement in research, explained how people with PD can get involved with research, and discussed why research is so vital for the PD community.

Patient and public involvement (PPI) in research describes research that is performed with or by patients and members of the public, rather than something that is done “to,” “for,” or “about” them. Patients and the public are active partners in the research, rather than participating in existing research studies (which are also important!).

Stages of the research pipeline and what you can do:

  1. Drug discovery – People affected by PD can be involved at this stage by helping researchers understand the condition, identify unmet needs, and drive the direction of research.
  2. Pre-clinical development – People affected by PD can be involved at this stage by commenting on whether the expected benefits are worth the risks being assessed for this drug.
  3. Clinical trials – People affected by PD can be involved at this stage by ensuring the plans for the study are feasible for participants and whether the study design and outcome measures are appropriate.
  4. Licensing and approval – People affected by PD can be involved at this stage by working with regulatory organizations for rollout of the treatment.

Examples of specific activities:

  • Discussing with researchers what topics are important
  • Helping to write a simple summary in plain English
  • Ensuring consent processes are clear and accessible
  • Commenting on study documents
  • Helping to share study protocols as appropriate
  • Helping to understand and share results

Why is involvement by patients and the public so important? This can result in better research overall: improved study design, more relevant outcome measures, and faster recruitment. The research team may feel more motivated, may receive validation of their ideas, and may carry over this new approach for future endeavors. The people involved may feel empowered, may become more educated about the disease and research processes, and have the opportunity to meet others affected by PD.

Parkinson’s UK works with over 200 research teams to facilitate involvement by people affected by PD, and helps research to encourage this involvement as well. The speaker mentioned other advocacy groups that have similar programs and resources, though most were in the UK.

She encouraged the audience to take action:

  1. Reach out to your local PD organization
  2. Connect with local researchers
  3. Build collaborations with industry

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Talks by Prof. Bas Bloem and Prof. Ray Dorsey were similar to recent webinars that were summarized on the Stanford Parkinson’s Community blog:

Exercise in Parkinson’s disease – Panel including Prof. Bas Bloem

January 8, 2020

Ending Parkinson’s disease – Prof. Ray Dorsey

March 16, 2020