Invitae Launches Rare Patient Network for Pediatric Patients With Rare Neurodevelopmental Diseases
Invitae has launched the Rare Patient Network to expand its Ciitizen platform for patients with pediatric epilepsy and/or developmental delay. This initiative aims to recruit thousands of patients, creating a vast database of patient-consented genetic and clinical data. The platform enhances patient engagement in clinical studies, facilitating research on rare neurodevelopmental conditions. The project is part of Invitae's broader mission to improve healthcare and potentially enhance patient outcomes.
- Launch of Rare Patient Network to recruit thousands of patients with pediatric epilepsy and developmental delay.
- Expansion of the Ciitizen platform aims to create a comprehensive database for rare neurodevelopmental diseases.
- Enhanced patient engagement in clinical research without redundant information requests.
- Challenges remain in effectively managing the growth and recruitment of patients for clinical studies.
- Potential risks include loss of data and security breaches that could affect operations.
– Ciitizen real-world data platform expansion helps advance research and potentially improve outcomes for patients with pediatric epilepsy and/or developmental delay –
SAN FRANCISCO, Dec. 1, 2022 /PRNewswire/ -- Invitae (NYSE: NVTA), a leading medical genetics company, today announced the launch of the Rare Patient Network expanding Invitae's Ciitizen platform to all patients with pediatric epilepsy and/or developmental delay with plans to include other conditions in the coming months. By engaging with a broader community, Invitae, a leader in the rare pediatric neurodevelopmental field, aims to create value for significantly more patients with rare diseases.
Identifying and recruiting patients with rare diseases into clinical studies is difficult, making it challenging to understand the etiology, disease course, differences among subpopulations and the impact of novel treatments. The Rare Patient Network is a new approach to solving these challenges by directly engaging with the broader community of patients with rare neurodevelopmental conditions.
"The Rare Patient Network is a proactive way to empower patients," said Terry Jo Bitchell, PhD., executive director of COMBINEDBrain. "Even before a diagnosis or without a diagnosis, families who are grappling with epilepsy or a developmental delay will have a way to help each other and themselves simply by using their own medical record as a resource. When a treatment comes along, this resource will already be there just waiting to be part of the solution."
The Rare Patient Network enables patients with rare diseases to engage with Invitae's Ciitizen platform to participate in more clinical studies to help advance research without repeated requests from multiple sources for the same information.
"With the launch of the Rare Patient Network, we aim to break down silos by building the largest database of patient-consented genetic and clinical data of patients with rare neurodevelopmental disease," said Robert Nussbaum, M.D., chief medical officer at Invitae. "We have an ambitious goal of recruiting thousands of new patients with pediatric epilepsy and/or development delay to Invitae's Ciitizen data platform to create this database."
The data generated by Invitae's Ciitizen platform is comprehensive, leveraging the HIPAA right of access to gather full medical records, longitudinally, from all of the patients' sites of care. Patients have complete access to the records for their own use, can decide whether to participate in research and are also able to remain involved and informed about the research throughout a study, highlighting the benefits of this unique patient-centered research model.
"By expanding Invitae's rare neurodevelopmental cohort, Invitae is creating a valuable, new dataset," said Eiry W. Roberts, M.D., Chief Medical Officer of Neurocrine Biosciences. "The data collected can be helpful to conducting rapid natural history studies, understanding of the patient population and disease severity and potentially paving the way for new precision treatments."
For more information, visit http://www.invitae.com/rare-network.
About Invitae
Invitae Corporation (NYSE: NVTA) is a leading medical genetics company, whose mission is to bring comprehensive genetic information into mainstream medicine to improve healthcare for billions of people. Invitae's goal is to aggregate the world's genetic tests into a single service with higher quality, faster turnaround time and lower prices. For more information, visit the company's website at invitae.com.
Safe Harbor Statement
This press release contains forward-looking statements within the meaning of the Private Securities Litigation Reform Act of 1995, including statements relating to the company's belief that the expansion of its Ciitizen real-world data platform helps advance research and potentially improves outcomes for patients with pediatric epilepsy and/or developmental delay. Forward-looking statements are subject to risks and uncertainties that could cause actual results to differ materially, and reported results should not be considered as an indication of future performance. These risks and uncertainties include, but are not limited to: the company's history of losses; the company's ability to compete; the company's failure to manage growth effectively; the company's need to scale its infrastructure in advance of demand for its tests and to increase demand for its tests; the company's ability to use rapidly changing genetic data to interpret test results accurately and consistently; security breaches, loss of data and other disruptions; laws and regulations applicable to the company's business; and the other risks set forth in the company's filings with the Securities and Exchange Commission, including the risks set forth in the company's Quarterly Report on Form 10-Q for the quarter ended September 30, 2022. These forward-looking statements speak only as of the date hereof, and Invitae Corporation disclaims any obligation to update these forward-looking statements.
Invitae PR contact:
Amanda McQuery
pr@invitae.com
(628) 213-3283
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SOURCE Invitae Corporation
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