Reduce diagnostic delay in rare diseases
accelRare®, the HCPs' digital companion facing patients with an atypic clinical situation
Why would we need a pre-diagnosis tool in rare diseases?
Diagnostic odyssey
Definition
Diagnostic delay is when abnormally long delays occur, at one or more stages of the diagnostic process. It can also qualify a period during which no diagnosis of certainty can be made, for lack of sufficient clinical signs characteristics, resulting in support that is not the most suitable.
Some concrete examples
Pathology | Time to diagnose for 50% of patients | Time to diagnose for 75% of patients |
|---|---|---|
Cystic fibrosis | 1.5 months | 15 months |
Tuberous sclerosis | 4 months | 3 years |
Duchenne muscular dystrophy | 12 months | 3 years |
Prader Willi syndrome | 18 months | 6.1 years |
Marfan syndrome | 18 months | 11.1 years |
X Fragile syndrome | 2.8 years | 5.3 years |
Ehlers Danlos syndrome | 14 years | 28 years |
Source White Paper UNIR - Innovating together to reduce diagnostic error in rare diseases, 2019
The UNIR initiative
Ideation and co-creation
Health actors gathered to find innovative solutions to reduce diagnostic delay in rare diseases.
UNIR participants
