Table 1 The number of participants in each step and of meetings for the review
Step | Aim of each workshops/poll/meetings | Date | Methods | Number of participants | ||
|---|---|---|---|---|---|---|
Patients and family members | Researchers | Former policymakers | ||||
Step1 | To share the aim of the project and experiences of the patients | 6th Mar 2019 | Workshop (online) | 7 | 6 | 2 |
To understand the difficulties faced by patients with rare diseases | 9th Mar 2019 | Workshop (on-site) | 13 | 12 | 3 | |
To better summarise the results of the analysis | 19th Nov 2019 | Workshop (online) | 5 | 12 | 2 | |
Step2 | To develop the candidate criteria to set priorities for the research topics | 23rd Dec 2019, 27th Dec 2019, 7th Jan 2020 | Workshop (online) | 8 | 10 | 2 |
To select 10 candidate criteria | From 10 to 17th Jan 2020 | Poll (online) | 12 | 7 | 2 | |
Step3 | To determine the 5 criteria to apply | 17th Jan 2020 | Workshop (online) | 3 | 3 | 0 |
To apply the selected criteria to set priorities for research topics | ||||||
Criterion (1) ‘Research topics related to various QOL aspects, such as psychological and lifestyle aspects’ | 17th Jan 2020 | Workshop (online) | 3 | 3 | 0 | |
Criterion (2) ‘Research topics related to expected findings meant to alleviate patients’ pain and burden and lead them to gain “independence”’ | 18th Jan 2020 | Workshop (online) | 4 | 4 | 0 | |
Criterion (3) ‘Research topics that patients readily experience as issues and would directly feel the benefits of, if properly addressed’ and Criterion (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’ | 28th Jan 2020 | Workshop (online) | 3 | 7 | 1 | |
Criterion (8) Research topics where Internet use is expected to be an effective problem-solving tool | 14th Sep 2020 | Workshop (online) | 6 | 10 | 0 | |
Criterion (7) Research topics related to children | 18th Jan 2021 | Workshop (online) | 8 | 7 | 1 | |
Criterion (5) Research topics that affect the surrounding environment, such as family and healthcare providers | 19th Jan 2021 | Workshop (online) | 3 | 7 | 1 | |
Criterion (6) Research topics on problems that cannot be resolved even though patients have been making their own efforts | 21st Jan 2021 | Workshop (online) | 7 | 8 | 1 | |
Additional step | To brainstorm on specific research questions | |||||
Research topic: ‘Anxiety’ | 7th Jan 2021 | Workshop (online) | 5 | 11 | 1 | |
Research topic: ‘Impediments to daily life’ | 9th Jan 2021 | Workshop (online) | 4 | 7 | 1 | |
Reviewing | To review previous study findings and considering subsequent directions | 30th May 2020 | Meeting (online) | 7 | 12 | 1 |
15th Apr 2021 | Meeting (online) | 8 | 9 | 1 | ||