Consensus on intake questionnaire data elements in the development of an aerodigestive registry

Area of Science:

• Medical Informatics
• Clinical Research
• Patient Registries

Background:

• Aerodigestive disorders affect a significant patient population.
• Multicenter registries are crucial for advancing research and clinical management.
• Standardized data collection is essential for robust research outcomes.

Purpose of the Study:

• To establish core data elements for a multicenter aerodigestive patient registry intake questionnaire.
• To create a consensus-driven, efficient data collection tool for aerodigestive care.

Main Methods:

• Modified Delphi method used to achieve expert consensus.
• Review and categorization of patient questionnaires from eight institutions.
• Iterative voting and ranking of 198 initial data elements.

Main Results:

• Consensus was reached on 83 out of 198 (41.9%) initial elements.
• Fourteen categories of data elements were identified, including demographics, symptoms, and history.
• Three rounds of ranking were necessary to achieve consensus.

Conclusions:

• The developed intake questionnaire is a critical component for the aerodigestive registry.
• The consensus-driven approach ensures a streamlined and efficient registry.
• This initiative will foster research and guide the future management of aerodigestive patients nationwide.