I would just mention that a lot of these registries are driven by either researchers or clinicians who have information.
There needs to be much more of a push to get more information directly from patients. Information coming straight from patients is obviously going to be in some cases less reliable, but there are going to be aspects of a disease that a clinician never sees, things that happen only at night, or things that affect the patient significantly but don't make it into what they discuss with their clinicians.