Obtaining and managing data sets for individual participant data meta-analysis: scoping review and practical guide

Area of Science:

• Clinical research methodology
• Data science and analytics
• Public health policy

Background:

• Increased access to individual participant data (IPD) from clinical studies due to policy changes.
• Growing number of individual participant data meta-analyses (IPDMAs) being conducted.
• Persistent challenges in data retrieval rates despite improved access.

Purpose of the Study:

• To describe the challenges encountered when retrieving IPD for IPDMAs.
• To provide practical guidance for obtaining and managing IPD datasets.
• To inform researchers on navigating data sharing policies and procedures.

Main Methods:

• Systematic literature search of MEDLINE, Embase, and Cochrane Library for IPD retrieval strategies.
• Exploration of pharmaceutical company websites and industry organizations for policy updates.
• Documentation of practical challenges and solutions from a comprehensive IPDMA and prior experiences.

Main Results:

• Identification of 16 relevant articles on conducting IPDMAs.
• Overview of pharmaceutical company data sharing policies and procedures.
• A 6.5-year duration for IPDMA data collection and analysis, highlighting administrative barriers, communication issues, policy changes, and diverse skillset requirements.

Conclusions:

• Awareness of data sharing practices and potential obstacles can optimize IPDMA data management.
• Adequate project funding and timeline flexibility are crucial for successful IPD collection and analysis.
• Researchers should acknowledge and assist study authors/administrators with data preparation for sharing.