Category 1: Criteria that are particularly important for strengthening future research on rare diseases |
(1) Research topics related to various QOL aspects, such as psychological and lifestyle aspects |
(2) Research topics related to expected findings meant to alleviate patients’ pain and burden and lead them to gain ‘independence’ |
(3) Research topics that patients readily experience as issues and would directly feel the benefits of, if properly addressed |
(4) Topics on which research has been set aside or delayed because the number of the patients with the rare disease is so small, or the diseases were not life-threatening |
Category 2: Criteria in which patients and family members voted more than researchers and former policymakers |
(5) Research topics that affect the surrounding environment, such as family and healthcare providers |
(6) Research topics on problems that cannot be resolved even though patients have been making their own efforts |
Category 3: Criteria with specific important perspectives that were not covered by the criteria in Categories 1 and 2 |
(7) Research topics related to children |
(8) Research topics where Internet use is expected to be an effective problem-solving tool |