User-Centered Development and Testing of the Online Patient-Reported Outcomes, Burdens, and Experiences (PROBE) Survey and the myPROBE App and Integration With the Canadian Bleeding Disorder Registry: Mixed Methods Study

Federico Germini   ^{1, 2} , MSc, MD ;   Victoria Borg Debono   ¹ , BHSc, MSc, PhD ;   David Page   ³ , BEd ;   Victoria Zuk   ¹ , MSc ;   Alexandra Kucher   ⁴ , MSc ;   Chris Cotoi   ¹ , BEng, EMBA ;   Nicholas Hobson   ¹ , DIT ;   Michael Sevestre   ⁵ , MCS ;   Mark W Skinner   ^{1, 6} , JD ;   Alfonso Iorio   ^{1, 2} , MD, PhD ;   PROBE Investigators   ⁷

¹ Department of Health Research Methods, Evidence, and Impact, McMaster University, Hamilton, ON, Canada

² Department of Medicine, McMaster University, Hamilton, ON, Canada

³ Canadian Hemophilia Society, Montreal, QC, Canada

⁴ Patient Outcomes Research Group Ltd, Washington, DC, United States

⁵ Design2Code Inc, Waterloo, ON, Canada

⁶ Institute for Policy Advancement Ltd, Washington, DC, United States

⁷ see Acknowledgments, Hamilton, ON, Canada