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 Renal Patient view 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 CH100/AH100 and post-vaccination surveillance.
We review the results of the screening for complement abnormalities in all patients and discuss the implications of these results with patients. In patients who do not have a pathogenic variant in C3, CFB, CFH, CFI or CD46, or have a variant of uncertain significance we are currently recommending that these patients are entered into the 100000 genomes study. 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.