Cerner collecting Gaucher disease data in new registry

Cerner launched a registry that will collect data from patients diagnosed with Type 2 and Type 3 Gaucher disease, an autosomal recessive disease.

Cerner and the International Gaucher Alliance, announced the opening of the Gardian  (Gaucher Registry for Development Innovation and Analysis of Neuronopathic Disease) registry. It will collect retrospective and prospective clinical and health outcome data for patients diagnosed with Gaucher disease, according to an April 26 press release.  

The registry is owned by the patient community, but will be led by Cerner Enviza, an operating unit within Cerner, focused on accelerating the discovery, development and delivery of insights and therapies to improve health. 

Caregivers will provide their perspective for pediatric and some adult patients, as well as the impact of caring for a family member with GD or neuronopathic GD, called nGD. 

Patients and caregivers will complete new patient and caregiver reported outcomes in the registry. 

The registertry will collect data through health IT company Aparito's iOS & Android-compatible web and mobile app platform, which captures eConsent, multiple, high-frequency data points from video, voice, wearables and electronic patient reported outcomes.

"​​There remains huge unmet needs in care, support, understanding and effective treatments for the neurological manifestations of the disease," said Tanya Collin-Histed, CEO of International Gaucher Alliance. "Gardian will play an important role into better understanding the impact of the disease on patients and caregivers and ultimately enabling improved quality of life and better patient outcomes." 

The Gardian registry aims to provide a more comprehensive understanding of the natural history of disease for nGD patients to accelerate early diagnosis and care for patients. 

The evidence derived from Gardian will also support compound development and inform the feasibility, protocol design and implementation of clinical trials. 

The registry is open for registrations, and the first patient enrolled April 25.

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