Guiding Principles for PFIC Patient-Centered CER Projects
IMPACT participants explored questions such as “What would research look like that is truly centered on patients and families?”
Their answers were used to develop guiding principles which may be used when designing patient-centered CER projects.
For a practical checklist to apply these guiding principles in study planning, download the Researcher Companion (see p.7).
Guiding Principles
Outcome Driven
How will this project address the daily issues that patients face?
How will this project improve long-term patient quality of life of other PFIC families?
How will this project incorporate the social and economic aspects of the disease?
Patient-Centric
How will this project represent all the different subtypes and stages of PFIC
How will patient input be included in each stage of this project?
Transparent
How will patients be kept informed in each stage of this project, from planning to the dissemination of the results?
How will this project reach as many patients and families as possible?
