Table 1 Main roles and commitments of the patient advocacy representative on the Global aHUS Registry SAB

Promoting interest in the Registry among patients with aHUS

• Generate programme awareness and interest within the patient community

• Assist with involvement of patient support groups and individual patients

• Provide information on the aHUS Registry to potential patients

• Provide advice and support to patients on aHUS Registry-related matters

Providing input to the SAB on patient priorities

• Act as the interface with other patient advocacy groups to provide a broad patient perspective from multiple countries to the Registry

• Inform the Registry of analyses and scientific questions of interest to the patient community

• Propose, discuss and evaluate programme objectives with the Registry SAB

• Provide ad hoc review of patient-related documents such as informed consent forms, patient leaflets and similar materials