| PMC full text: | Published online 2024 Sep 30. doi: 10.1183/23120541.00026-2024
|
TABLE 3
Barriers and factors facilitating clinical and epidemiological research related to primary ciliary dyskinesia (PCD) according to the online survey participants (n=136)
| Main source of funding for PCD research# | |
 Institutional/governmental funding | 56 (41) |
| Competitive grants | 57 (42) |
| Funding from smaller foundations | 41 (30) |
| Funding from collaborative research | 24 (18) |
| Unfunded | 48 (35) |
| Compared to other diseases in the field, obtaining funding for PCD is | |
| More difficult | 69 (51) |
| Easier | 1 (1) |
| No difference | 29 (21) |
| I do not know | 37 (27) |
| Barriers in acquiring funding for PCD clinical and epidemiological research ¶ | |
| Low awareness about PCD | 113 (83) |
| High competition for funding | 102 (75) |
| Lack of commercial application | 89 (65) |
| Rarity of disease | 80 (59) |
| Low mortality rate/not considered severe | 58 (43) |
| Lack of supporting evidence/existing research framework | 57 (42) |
| Lack of local support in preparing a funding application | 54 (40) |
| Lack of expertise of research team/limited publication record | 44 (32) |
| Higher interest in basic research projects | 41 (30) |
| Other factors hindering PCD research ¶ | |
| Lack of dedicated research time | 93 (68) |
| Small numbers of patients | 86 (63) |
| No/inactive patient support group | 86 (63) |
| Disease heterogeneity | 79 (58) |
| Few colleagues locally with expertise in PCD | 78 (57) |
| Lack of needed resources | 64 (47) |
| Lack of good local or extended collaborative network | 38 (28) |
| Lack of interest about PCD from most colleagues | 38 (28) |
| Lack of motivation to participate from patients | 31 (23) |
| Factors facilitating PCD research ¶ | |
| National and international registries and cohort studies | 121 (89) |
| National and international multidisciplinary collaborations | 112 (82) |
| Standardisation of care and collected information to improve data quality | 116 (85) |
| Active involvement of patients in research | 106 (78) |
| Patient support groups | 103 (76) |
Characteristics are presented as n (%). #: multiple answers possible; ¶: 5-point Likert scale responses here presented are agree or strongly agree.