Table 2 Initiation of standardized multiprofessional treatment and care and information of disease specific resources in 369 individuals with a confirmed diagnosis in TRANSLATE NAMSE
| Â | Executed n (%) | Not appropriate for condition/not necessary* n (%) | Missing data n (%) |
|---|---|---|---|
Standardized multiprofessionel treatment and care (CPW checklist item 24) | |||
 Referral to further treatment and care | 345 (93.5) | 0 (0.0) | 24 (6.5) |
 Information diagnosis | 346 (93.8) | 10 (2.7) | 13 (3.5) |
 Information diet/nutrition | 47 (12.7) | 308 (83.5) | 14 (3.8) |
 Training for monitoring | 215 (58.3) | 142 (38.5) | 12 (3.3) |
 Information about medication | 217 (58.8) | 137 (37.1) | 15 (4.1) |
 Education for behavioural measures | 242 (65.6) | 112 (30.4) | 15 (4.1) |
 Psychological counselling | 144 (39.0) | 212 (57.5) | 13 (3.5) |
 Social-legal counselling | 100 (27.1) | 254 (68.8) | 15 (4.1) |
 Genetic counselling | 92 (24.9) | 262 (71.0) | 15 (4.1) |
 Delivery emergency pass | 50 (13.6) | 301 (81.6) | 18 (4.9) |
Information about disease specific resources (CPW checklist items 26–29) | |||
 Information about research projects | 130 (35.2) | 226 (61.2) | 13 (3.5) |
 Information about patient registry | 150 (40.7) | 204 (55.3) | 15 (4.1) |
 Information about patient advocacy group | 134 (36.3) | 219 (59.3) | 16 (4.3) |
 Information about Alliance for Chronic Rare Diseases | 242 (65.6) | 104 (28.2) | 23 (6.2) |