At 4 of the 6 visits, participants are asked to complete various questionnaires:
- Quality of life questionnaire to assess how their disease affects aspects of their everyday life. There are separate questionnaires for adults and children.
- Activity questionnaire to assess the amount of physical activity participants do as part of their everyday lives, such as housework, yard work, exercise, sports, and recreation.
- Pregnancy questionnaire (as appropriate) to assess if their disease has or had any effect on their pregnancy and vice versa.