Rare Disease Qualitative Research: Methodologies for Conceptual Strength and Representativeness

Qualitative data in the form of patient and caregiver input is increasingly used in the process of planning, therapy development, and ethical review (O’Reilly and Parker, 2012). Qualitative data methodologies must capture sufficient depth of information to describe the phenomenon being studied (Fossey et al., 2002).

Acknowledgement: Jett Foundation provided funding support that enabled this work and allowed proof of concept testing of certain methods.