From: Impact of biobanks on research outcomes in rare diseases: a systematic review
Theme | Theme code | Category | Linked resource (ref.) | Identified in registries linked to Biobanks (REG + BB) | Identified in stand-alone registries (REG) | Identified in stand-alone Rare Disease Biobanks (RDBB) |
---|---|---|---|---|---|---|
Basic Science | BS | Omics | ✓ | ✓ | ||
Biomarker development | ✓ | |||||
Subcohort identification | ✓ | ✓ | ||||
Epidemiology | ✓ | ✓ | ✓ | |||
Translational science | T | Increased research projects | ✓ | ✓ | ✓ | |
Randomised controlled trials | ✓ | ✓ | ||||
Biospecimen contribution to studies | ✓ | ✓ | ||||
Clinical observation | CO | Diagnosis/survival rate | ✓ | ✓ | ||
Natural history of disease | ✓ | ✓ | ||||
Clinical treatment | CT | Diagnostics | ✓ | ✓ | ||
Guidelines for treatment | ✓ | ✓ | ||||
Treatment evaluation | ✓ | ✓ | ||||
Facilitators | F | Benefits to stakeholders | ✓ | ✓ | ✓ | |
Collaborations | [24, 48, 20, 13, 26, 22, 17, 18, 32, 29, 33, 35, 30, 25, 49, 19, 21, 27] | ✓ | ✓ | ✓ | ||
Engagement | ✓ | ✓ | ✓ | |||
Recruitment | [34] | ✓ | ||||
Pro-active marketing | [14] | ✓ | ||||
Barriers | B | Challenges | ✓ | ✓ | ✓ |