COLLEGATI AD UNO DEI NOSTRI 41 PAESI MEMBRI PER SOSTEGNO, CONSIGLIO E NOTIZIE A LIVELLO LOCALE

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IGA Neuronopathic Gaucher Disease (nGD) Global Registry: Patient Community Phase I Final Report

12 marzo 2020

Following on from the recent announcement about our letter of intent to partner with Kantar to manage the day to day running of the IGA’s neuronopathic Gaucher disease patient registry and our subsequent Facebook Live session with Tanya Collin-Histed, we’re delighted to share with you the ‘lay’ report from Phase 1 of the project as promised.  Download it here

The Global registry will not only collect clinical information via the patients treating clinician, it will also be a portal to communicate with patients and their carers and collect quality of life data directly from patients and families. If you would like to be included onto the global registry please let us know by emailing: tanya@gaucheralliance.org

Please note: the roll-out of the Registry to collect clinical data will be over several years, however the patient communication portal will be available to all patients we anticipate sometime in the 2nd half of the year, once sponsor funding has been secured.