Patient Involvement |
Development of project protocol and materials Regular progress evaluations and reviews of results Development of interview prompts and cues Semistructured exploratory interviews Participation in breakout session at OMERACT 2014 Reporting of results*
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Use of PROMIS Measures in AAV | Development of a Disease-specific PRO Instrument for AAV | Application of the ICF in AAV |
Selection of PROMIS domains for use in the study Selection of PROMIS domains and instruments for longitudinal study and randomized control trials Pilot of PROMIS instruments Testing and feedback on administration of PROMIS to research subjects Review of preliminary data and analysis* Design of ancillary studies* Review of final PROMIS “toolbox” for use in clinical research in AAV*
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Review of candidate questions Review of freelisting data used to define relevant domains and shape PRO items Cognitive interviews of candidate questionnaire items Survey of ∼500 UK and US patients to determine scale structure and item reduction* Participants in randomized controlled trial to further evaluate final questionnaire items* Review of final instrument for use in future validation studies*
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Involvement in analysis of interview transcripts Designing a questionnaire for prioritizing the ICF categories identified at individual interviews Participation in online exercise to prioritize the ICF categories identified at individual interviews Participation in a consensus meeting to finalize the ICF Core Set for AAV*
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