In an update about the aHUS Registry earlier this year the alliance reported that Alexion had cut back its investment in , and operation of , its Registry. (See link here).
Disappointingly it went against aHUS patients wishes to participate in Registries and Research about their disease.
Alexion has however made it more transparent about which hospitals have patients in which the follow up monitoring will continue ( and even recruitment of new patients will continue e.g. Belgium France and Poland with Turkey to follow ).
The list of hospitals can be seen by clicking here
If any viewer is a patient at any of these hospitals you can help aHUS patients everywhere by letting your clinician know how important it is you to participate and in particular complete the Registry’s six monthly “patient reported outcomes ” questionnaire about how you or your child are feeling. Such data is as important as blood tests for how your treatment is benefiting you.