Box 3 Examples of the proposed research questions

Research questions on ‘anxiety’

 · What are the characteristics of individuals who are more or less likely to experience anxiety?

 · Are there any anxieties specific to Japan within the same disease area?

 · Does knowing the social system changes one’s anxiety?

 · When do patients with rare diseases have a sense of happiness?

Research questions on ‘impediments to daily life’

 · What factors significantly reduce the QOL of patients and their families?

 · What social systems would be needed to make it easier for patients to be able to go out?

 · What do children find challenging in their school life?

 · How well do healthcare providers understand patients’ daily life?

 · How can impediments to daily life be classified?