Candidates of criteria for priority setting | Total (21) | Patients and family members (12) | Researchers (7) | Former policymakers (2) |
---|---|---|---|---|
Research topics related to various QOL aspects such as psychological and lifestyle aspects | 18 | 11 | 5 | 2 |
Research topics related to life and death | 17 | 9 | 6 | 2 |
Research topics related to expected findings meant to alleviate patients’ pain and burden and lead them to gain ‘independence’ | 16 | 11 | 4 | 1 |
Research topics that cannot be solved without involving researchers or policymakers | 13 | 9 | 4 | 0 |
Research topics that patients readily experience as issues and would directly feel the benefits of, if properly addressed | 13 | 7 | 5 | 1 |
Research topics related to physical function | 11 | 6 | 3 | 2 |
Research topics that directly affect the diseases or the patients themselves | 11 | 8 | 3 | 0 |
Research topics that impact society as a whole (social systems or individuals’ behaviours) | 11 | 4 | 6 | 1 |
Research topics on the difficulties that cause other problems, and their resolution which is expected to simultaneously solve many other problems | 10 | 4 | 5 | 1 |
Research topics related to children | 9 | 6 | 2 | 1 |
Research topics related to many rare diseases | 8 | 4 | 3 | 1 |
Research topics specific to rare diseases | 8 | 4 | 3 | 1 |
Research topics whose findings could have a ripple effect beyond rare intractable diseases | 8 | 4 | 2 | 2 |
Research topics that have big disadvantages before and big advantages after finding a solution | 8 | 5 | 2 | 1 |
Research topics related to expected research findings that lead to reducing the burden imposed on families and healthcare providers | 8 | 6 | 1 | 1 |
Topics of research in which resources and knowledge are already available, and their application remains a bottleneck | 8 | 5 | 3 | 0 |
Research topics with few studies addressing the issue | 8 | 4 | 4 | 0 |
Research topics where Internet use is expected to be an effective problem-solving tool | 7 | 4 | 2 | 1 |
Research topics that affect the surrounding environment, such as families and healthcare providers | 6 | 5 | 1 | 0 |
Research topics expected to have a high cost-effectiveness | 5 | 1 | 2 | 2 |
Research topics on problems that cannot be resolved even though patients have been making their own efforts | 5 | 4 | 1 | 0 |
Topics of research that can be carried out with limited time and resources | 4 | 1 | 3 | 0 |
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 | N/A | N/A | N/A | N/A |
Research topics that require legal knowledge and that aim to bridge gaps between real life and related laws | N/A | N/A | N/A | N/A |
Research topics that aim to develop new applications and methods for newly discovered or invented technologies (e.g. iPS cells) | N/A | N/A | N/A | N/A |