Innovative Approaches; Tailored Solutions

The right design starts with a clear purpose. It's important to understand the needs your Patient Registry should fulfil, which means knowing who will use the insights and what questions they need to answer.

For example,

• What type of evidence is needed for each activity planned?
• Will this registry support activities with regulators, payers, healthcare providers, patients?

Taking time to consider the data required for your needs is critical. Selecting the right data collection approaches will allow the Patient Registry to be aligned to your needs. Some high-level choices may explore options such as:

• Prospective or retrospective data? Or a combination?
• Site-centric or patient-centric?
• Claims, electronic medical records, existing registries, PROs, direct-to-patient, etc.?

A good data collection strategy should consider the full context and purpose of the registry e.g., the questions to be asked of the data, what the current care pathway is for patients and how this has changed, which locations and geographies are of interest, where data plans from different activities can be integrated to reduce burdens and increase quality, etc.

Access to the appropriate technology brings the design to life. Knowing about and being able to use the most effective technology in order to collect, manage and access the data for a Patient Registry is the key to success.

Regardless of scale, IQVIA can provide the technology required to provide the appropriate tools to help your Patient Registry function effectively and provide high-quality data.

For example:

• IQVIA Connection (IQVIA Connection - IQVIA)
• IQVIA Health Research Space (IQVIA HRS; Health Research Space – IQVIA)
• Clinical Insights (Webpage under construction)

Evidence and insights come from the use of good quality data, so it is important that Patient Registries provide quality control, as well as suitable monitoring, reporting and access to collected data.

Robust quality assurance, combined with user-friendly data access, are vital to a registry’s success and are the core of those designed by IQVIA.

While data collection and storage are a Patient Registry’s primary function, proactive planning to disseminate information to audiences is equally important. Delivering evidence and insights to the intended audiences is a requirement of any design.

This can include:

• Real-time dashboards
• Routine reports
• Formal regulatory submissions

Partnering with IQVIA teams, such as the Health Communications Group (IQVIA Health Communications Group - IQVIA), can provide effective dissemination for any Patient Registry.

The design of a Patient Registry should meet your defined needs. However, if (or when) those needs change overtime, its design should evolve accordingly. Agility by design will ensure a Patient Registry delivers value across an asset’s or business’ lifecycle.