Observed consensus on research priorities for the hypertriglyceridemia patient registry.

Background: Priority setting in health research has been described as essential due to disparities within and between countries and populations. Commercial benefits to the pharmaceutical industry may increase the generation and use of regulatory Real-World Evidence which has recently been reported in the literature. Research must be steered by valuable priorities. This study's objective is to identify key gaps in the knowledge of triglyceride-induced acute pancreatitis by generating a list of potential research priorities for a Hypertriglyceridemia Patient Registry.

Method: The Jandhyala Method was used to observe the consensus of expert opinion from ten specialist clinicians in the treatment of triglyceride-induced acute pancreatitis across the US and EU.

Results: Ten participants completed the consensus round of the Jandhyala method and generated 38 unique items which they all agreed with. The items were included in the generation of research priorities for a hypertriglyceridemia patient registry and presented a novel application of the Jandhyala method for the development of research questions, in aid of the validation of a core dataset.

Conclusion: The TG-IAP core dataset and research priorities combined can develop a globally harmonized framework where TG-IAP patients can be observed simultaneously using the same set of indicators. This will increase knowledge of the disease and facilitate higher-quality research by addressing issues related to incomplete data sets in observational studies. Furthermore, validation of new tools will be enabled, and diagnosis and monitoring will be improved as well as the detection of changes in disease severity and subsequent disease progression, improving the management of patients with TG-IAP overall. This will inform personalized patient management plans and improve patient outcomes along with their quality of life.