Data Collection, Patient Review and Counselling
Data collected on patients referred to the National aHUS Service is critical to improving our knowledge base for best patient care.
As part of the shared care protocol, patients should be enrolled onto Patientview and RaDaR – once a patient has been enrolled onto these services, longitudinal data is automatically collected and returned to the National aHUS Service.
This is in addition to the monitoring requirements described elsewhere including testing for CH50/AP100 and post-vaccination surveillance described elsewhere.
Screening of Family Members
We review the results of the screening for complement abnormalities in all patients and discuss the implications of these results with patients.
We will offer the patients the opportunity for appointments with a consultant from the National aHUS Service (either face to face or remotely). We will maintain written communication with the referring Consultant and patient’s General Practitioner following all appointments. When appropriate, we will offer appointments to family members for genetic counselling and provide educational material to patients and family members.