Table 1 Registries survey results overview
Are you aware of any Registry of Diseases covered by the ERN RITA? | Number (%) |
|---|---|
Responder RITA members | 90/126 (71) |
Responder HCPs | 39/45 (87) |
Responder family organizations | 4/8 (50) |
Delegate to other RITA members | 15/90 (17) |
Countries | 14 |
Informative responders | 75/126 (60) |
Coordinators | 27/75 (36) |
Participants | 53/75 (71) |
Knew registry without participating | 27/75 (36) |
Not knew any registry | 2/75 (3) |
Registries | 52 |
Is it a National or International Registry? | |
International | 16/52 (31) |
National | 36/52 (69) |
Which area of diseases is covered by the Registry you are involved? | |
Autoimmunity | 29/52 (56) |
Primary immunodeficiency | 15/52 (29) |
Autoinflammation | 20/52 (39) |
Only autoinflammation | 12/52 (23) |
What type of data are you collecting? | |
Demography | 42/52 (81) |
Diagnosis | 45/52 (87) |
Signs and symptoms | 40/52 (77) |
Therapy | 39/52 (75) |
Safety | 28/52 (54) |
Genetic | 20/52 (39) |
Laboratory | 35/52 (67) |
Imaging | 5/52 (10) |
Biobank | 15/52 (29) |