Steps to Developing Effective Patient Registries: Parkinson’s Foundation

Navitas Life Sciences will be at the Parkinson’s Foundation and Parkinson Study Group Annual Conference 2023

Patient registries are vital tools, orchestrating the collection of clinical data to advance the understanding and treatment of various conditions. We are delighted to be sponsoring the upcoming Future of Parkinson’s Disease: Improving Care and Driving Research event that is to be co-hosted by the Parkinson’s Foundation and the Parkinson Study Group in Austin, TX.

This blog explores the intricacies of patient registries, providing insights into their role in elevating quality of care, particularly in the context of Parkinson's disease.

What is a Patient Registry?

Patient registries, often termed disease registries, use observational study methods to collect clinical data on a group of patients. These registries collect this data to gather insight into specific characteristics and outcomes for populations defined by a particular disease, condition, or exposure. This organized approach serves predetermined scientific, clinical, or policy purposes.

Setting Up a Patient Registry: Key Steps

Articulate the Purpose:
It is important to define the registry's goals, rationale, and scope to align with your specific area of interest, answering crucial questions about the disease, its effects, and treatment complications. Agencies that are focused on advancing care for patients impacted by disease, like the Parkinson’s Foundation, support patient registries to help improve their understanding of the condition and the patient outcomes.

Capability Assessment:
Evaluate whether the envisioned registry can effectively address identified goals and if prospective data collection aligns with scientific objectives. Linking data collection systems with relevant data sources should be a mindful decision, ensuring data quality.

Strategic Partnering:
Navitas Life Sciences has supported numerous agencies, including U.S. Federal Government agencies in the planning, setting up and management of clinical registries, along with support for meta-data driven data harmonization and system integration.

Forging a Competent Team:
A skilled registry team should comprise experts in management and support of clinical registries. This should include project management professionals, medical specialists, and data collection software experts. A proficient team directly influences registry efficiency.

Core Data Set and Patient Outcomes:
Expert input in managing clinical registries is vital in selecting a relevant core data set aligned with the registry's purpose. Partnering with an experienced team will aid in clearly defining the target population and patient outcomes early in the planning process.

Effective Operation Support:
Ensure comprehensive operation and regulatory support including site support, monitoring, system and system interoperability, data management, data harmonization and integration across multiple sources, and data analysis and visualization.

Tailored Capabilities for Client’s Unique Needs:
Customize the registry goals and data collection methods to cater specifically to the unique requirements, ensuring a tailored and effective solution.

Site-Level Operation and Regulatory Support:
Provide dedicated support for completion of on-site and remote study procedures, coupled with meticulous tracking of site metrics to enhance performance and identify potential pain points.

Why Patient Registries Matter:

Patient registries play a transformative role in healthcare, offering invaluable insights into disease patterns, treatment outcomes, and patient experiences. With respect to Parkinson's disease, these registries become powerful tools for understanding the condition's nuances, improving care quality, and fostering collaboration among stakeholders.

Navitas Life Sciences adheres with structured planning, engaging key stakeholders, and leveraging technology, to pave the way for efficient patient registry development, contributing significantly to improved patient outcomes and enhanced quality of care.

Navitas Clinical Research is delighted to sponsor

Future of Parkinson’s Disease: Improving care and driving research

Co-hosted by the Parkinson’s Foundation and the Parkinson Study Group

Date: November 30 – December 03, 2023

Venue: JW Marriott, Austin, TX

Schedule a Meeting Now

Meet Our Team:

Sarah Lawrence

Senior Clinical Project Manager
Navitas Clinical Research

Renuka Bhisetti

Research Specialist II, Clinical Operations
Navitas Clinical Research

Kimberly Flotta

Director Business Development – Clinical
Navitas Clinical Research

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