Parkinson’s Foundation’s PD GENERation Study: Strategic Partnership with Navitas Life Sciences

As the world observes World Parkinson’s Day on April 11th, a day dedicated to raising awareness about Parkinson’s disease and honouring Dr. James Parkinson, who first described the condition in 1817, the spotlight turns to groundbreaking initiatives that harness genetic research to transform patient care. One such initiative, PD GENEration, led by the Parkinson’s Disease Foundation, is revolutionizing our understanding of Parkinson’s disease through comprehensive genetic testing and clinical registries.

In this blog, Victoria Crawford, Research Specialist I, and Omar Khalid, Lead Data Manager, share key insights into the partnership between Navitas Life Sciences and the Parkinson’s Disease Foundation. They explore how Navitas’ expertise in clinical registries, data management, and Real World Data and Real World Evidence capabilities is helping advance personalized medicine and accelerate critical discoveries in Parkinson’s disease.

Authors

Omar Khalid

Lead Data Manager

Victoria Crawford

Research Specialist

What were the biggest challenges in managing PD GENEration sites, and how did Navitas Life Sciences help streamline operations across 90 locations?

As PDGENEration continues to expand globally, adapting our workflow to accommodate the growing number of sites has been an ongoing challenge that we have successfully managed. We have had to adapt our understanding to accommodate the needs that vary country by country.

How did our support enhance patient tracking and engagement within the registry?

By helping Parkinson’s Foundation focus on the most crucial data that is necessary to satisfy stakeholders, NLS was able to use combined expertise in data management and clinical operations to implement specific procedures designed to target areas that require additional quality review and quality control efforts. NLS helped Parkinson’s Foundation to fully grasp intricate areas of the registry data by providing data insights to allow the team to identify key areas requiring additional focus or increased monitoring. These data insights provided critical understand of data quality at the site and patient-level, thus providing a full picture of the status of PD GENEration at a high level and at a more granular level. Working directly with sites to understand areas of concern, our team helped the Parkinson’s Foundation become more familiar with their data and make informed decisions to strategically increase enrollment while also ensuring study data quality.

Can you describe how Navitas facilitated the integration of clinical and genetic data for PD GENEration?

NLS facilitated the integration of clinical and genetic data by applying our knowledge and understanding of Application Programming Interface (API) to automate the flow of data between the multiple systems that make up the PD GENEration registry.

Based on our success with PD GENEration, what are some key learnings that can be applied to future genetic disease registries?

As registry studies become more common and as Biotech companies and stakeholders understand the value of these types of trials, there is a need to implement registries in a thoughtful manner to ensure outcomes that are meaningful and valid. Registries are often required to utilize data across many different sources and platforms, therefore taking full advantage of advanced technology such as API programming will help manage the volume of data that is inevitable with registries. Meta-data driven data system interoperability and meta-data driven data harmonization and integration form a critical data science and technology foundation to help organize data from multiple sources in a coherent manner. In this way, registry objectives are achieved with minimized site and patient burden, while also ensuring all data collected is of the highest quality.

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How do you see Navitas Life Sciences expanding its support for similar foundations and initiatives in the future?

As biotech organizations and foundations come to understand the value of registry studies, it will be crucial for Clinical Research Organizations (CROs) such as NLS to rise to meet the needs of these organizations. With many years’ experience supporting PD GENEration, NLS is uniquely positioned to apply expertise across all future partnerships. Our ability to work across teams, understand common goals among sponsors and stakeholders, and apply significant experience with advanced technology to ensure success sets our team apart from other organizations.

Partnering with Navitas Life Sciences for Successful Clinical Registries

Partnering with Navitas Life Sciences empowers organizations like the Parkinson’s Foundation to drive meaningful advancements in genetic research and clinical registries. Our expertise in real world evidence, clinical data management, and streamlined site operations ensures the seamless execution of large-scale studies like PD GENEration.

By leveraging automation, centralized workflows, and adaptive programming, we enable efficient patient tracking, enhanced data accuracy, and regulatory compliance across global sites.

Navitas Life Sciences is a trusted partner in transforming real world data into actionable healthcare solutions. Our tailored approach to registry management not only accelerates discoveries but also enhances patient engagement and the overall impact of clinical studies.

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