Published on in Vol 9, No 1 (2022): Jan-Mar

Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/30797, first published .
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

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

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

Corresponding Author:

  • Federico Germini, MSc, MD
  • Department of Health Research Methods, Evidence, and Impact
  • McMaster University
  • 1280 Main Street West, 2C Area
  • Hamilton, ON, L8S 4K1
  • Canada
  • Phone: 1 905 525 9140 ext 26771
  • Email: germinif@mcmaster.ca