WEBINAR: Introducing the ROPAD consortium: unlocking real-world genetic insights to accelerate treatment access for Parkinson’s disease – September 24, 2024

September 24, 2024; 10:30AM ET; 3:30PM BST; 4:30PM CET

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This webinar will highlight recent findings of the ROPAD study and introduce the design principles of the newly launched ROPAD consortium to foster collaboration and accelerate treatments for Parkinson’s disease

The Rostock International Parkinson’s Disease Study (ROPAD) is a global observational study focusing on the role of genetics in Parkinson’s disease. The major goal of the study is to characterize the genetics of Parkinson’s disease to establish a better understanding of the disease progression, diagnosis, and treatment. Throughout this study, up to 25,000 Parkinson’s disease participants from around the world will be tested.

In this webinar, discover how registries and consortium approaches are pivotal in driving Parkinson’s disease efforts to accelerate treatment access. Specifically, expert speakers will discuss the ROPAD study and its evolution, and how it can serve multiple purposes, such as:

  • Genetic screening diagnostics
  • Protocol trial design
  • Observational follow up of Parkinson’s disease patients to gather patient experiences and outcomes that are central to research and regulatory decision-making in Parkinson’s disease

A must watch for industry leaders working in the field of Parkinson’s disease, patient advocacy groups, non-profit Parkinson’s disease institutions and CROs running Parkinson’s disease trials.​​​​​​​

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Speakers

Amelia Hursey
Research Manager, Parkinson’s Europe

Amelia joined the Parkinson’s Europe team in Jan 2022 as Research Manager. Since then she has developed Parkinson’s Europe’s Research Strategy, embedding a volunteer Research Steering Group into the organization and helping to increase the presence of Parkinson’s Europe in the clinical research world. She is also focused on bringing new initiatives to the table, such as the Parkinson’s Europe’s Engagement Network, which better connects the Parkinson’s community with research across Europe. Parkinson’s Europe is now a partner member of EUPATI, of the non–profit coalition to support advancements of DMT’s for Parkinson’s, Dementia with Lewy Bodies and Biologically related disorders, and the Critical Path for Parkinson’s. She has been working in the field of neurodegenerative research since 2009 and is a Patient Organizations board member with EUPATI since Sept 2023. She previously worked for the UK NIHR’s DeNDRoN delivering clinical trials and then at Parkinson’s UK from July 2015 as Research Participation Lead. She was responsible for initiatives to increase research participation for people affected by Parkinson’s, healthcare professionals and researchers, and created the innovative Parkinson’s UK Take Part Hub and co-produced the Staying Connected toolkit in collaboration with the HRA UK.

 

Taylor Kane
Patient Advocacy Advisor, CENTOGENE

Taylor Kane is a solution-driven patient engagement consultant with over ten years of experience in championing the needs of the rare disease community and serving as an intermediary between patients, researchers, and industry. Her passion for rare disease advocacy began in grade school, shortly after her father died from the rare X-linked condition adrenoleukodystrophy (ALD) and she learned that she was a genetic carrier of the disease. Over the years, Taylor has become deeply involved in the rare disease community, speaking at numerous rare disease-related events and contributing to a variety of campaigns as a thought leader and voice for the rare disease community.

 

Peter Bauer
Chief Medical and Genomic Officer, CENTOGENE

Prof Peter Bauer, MD, serves as CENTOGENE’s Chief Medical and Genomic Officer, where he combines an extensive clinical and medical understanding of genetic testing with an excellent knowledge of the latest scientific developments. Peter is passionate about turning medical questions into complete and fast analytical processes – ensuring that medically-driven results are brought to clinicians and patients immediately. He received his board certification in Human Genetics in 2006 and previously headed the Molecular Diagnostic Laboratory at the Institute of Medical Genetics and Applied Genomics at the University Hospital Tübingen. Peter has authored more than 250 publications in neurogenetics, oncogenetics, cardiogenetics, and sequencing technology.

 

What will you learn?

  • Current Parkinson’s disease initiatives and unmet needs in studies
  • Perspective from leading patient advocacy group on challenges in the Parkinson’s research space
  • ROPAD recent study results
  • ROPAD consortium design principles and benefit to the patient community

 

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