Observed consensus on research priorities for the hypertriglyceridemia patient registry

Area of Science:

• Medical research
• Clinical epidemiology
• Health outcomes research

Background:

• Health research priority setting is crucial due to global health disparities.
• Real-world evidence generation is increasing, driven by pharmaceutical interests.
• Valuable research priorities are essential for guiding scientific inquiry.

Purpose of the Study:

• To identify critical knowledge gaps in triglyceride-induced acute pancreatitis (TG-IAP).
• To generate a list of potential research priorities for a Hypertriglyceridemia Patient Registry.

Main Methods:

• Employed the Jandhyala Method for expert opinion consensus.
• Gathered input from ten specialist clinicians in TG-IAP treatment across the US and EU.

Main Results:

• Ten participants reached consensus, generating 38 unique research items.
• These items informed research priorities for a hypertriglyceridemia patient registry.
• Demonstrated a novel application of the Jandhyala method for research question development and core dataset validation.

Conclusions:

• A harmonized framework for TG-IAP patient observation can be developed using the core dataset and research priorities.
• This framework will enhance disease knowledge, improve research quality by addressing data incompleteness, and enable new tool validation.
• Improved diagnosis, monitoring, disease severity detection, and patient management are expected, leading to better patient outcomes and quality of life.