SAN FRANCISCO, March 22, 2018 /PRNewswire/ -- Invitae Corporation (NYSE: NVTA), one of the fastest growing genetic information companies, today announced an expansion of its network of rare and ultra-rare patient registries in its Patient Insights NetworkTM (PIN) program to include five additional collaborations with leading advocacy groups across a variety of genetic conditions. The programs are designed to empower patients to be active participants in their networks and further expand Invitae's work to connect patients with rare genetic disorders to research, clinical trials and information on managing their condition.
The first PIN to launch is led by No Stomach For Cancer, a leading research and advocacy organization focused on stomach cancer. Known as the Global Gastric Cancer Registry, the program enables patients, advocates, clinicians and researchers to share and access deidentified data on a number of different stomach cancers, including Diffuse Gastric Cancer, Proximal Stomach Cancer and Noncardia (Distal) Stomach Cancer.
"Having access to information on clinical experience and outcomes continues to help improve care for patients and accelerates access to clinical trials for both patients and researchers. These networks are making a powerful contribution to advancing our understanding of diseases, particularly in rare disorders." said Robert Nussbaum, M.D., chief medical officer of Invitae. "We're proud of our collaborations with these organizations and their membership to empower patients and help advance research and improve support for people living with these rare conditions."
"Two of the many important ways we can help patients and families facing stomach cancer are to connect them with research opportunities and to help them better understand their condition," said Jon Florin, Executive Director at No Stomach For Cancer. "Our registry program will help the global gastric cancer community by better characterizing how stomach cancer is currently treated through patient provided outcomes, as well as by connecting researchers with patients who may benefit from new therapies. The more people who join the Global Gastric Cancer Registry, the more the network will achieve."
People diagnosed with gastric cancer or a genetic predisposition to gastric cancer may learn more and join the Global Gastric Cancer Registry by visiting: http://gastriccancerregistry.org
In addition to the Global Gastric Cancer Registry, Invitae will be partnering with four other leading advocacy groups to host and launch additional Patient Insights Networks:
- The Bow Foundation will be launching a registry for patients with GNAO1 disorders, an ultra-rare pediatric genetic disorder causing developmental delays and neurological symptoms impacting fewer than 100 people worldwide.
- A registry aimed at gathering data on the GM2 Gangliosidoses, such as Tay Sachs disease and Sandhoff disease, rare neurodegenerative lysosomal disorders, in partnership with the National Tay Sachs & Allied Diseases Association (NTSAD).
- The RASopathies Network will launch a network aimed at gathering information across a number of rare genetic conditions associated with genetic variants in the Ras-MAPK pathway, that cause developmental delays, heart defects and neurologic problems.
- The Spastic Paraplegia Foundation is creating a network for families impacted by Hereditary Spastic Paraplegia or Primary Lateral Sclerosis, a group of rare primary upper motor neuron disorders that cause progressive spasticity (stiffness) and weakness of the leg and hip muscles.
Patient Insights Networks have reimagined the traditional patient registry to maximize the ability of patients to contribute and control their own data and amplify the impact that data can have for other patients, clinicians and researchers. Patient Insights Networks build powerful data sets of symptoms, history, diagnostic journey, quality of life and cost of living with serious health conditions. Patients, advocates, clinicians and researchers then have access to the de-identified data and research-ready patient communities to drive insights that can improve care, increase access to clinical trials and accelerate treatment development. Invitae's program currently covers more than 400 different health conditions. A complete listing of network partners can be found at https://pindirectory.invitae.com/.
For more information visit invitae.com/patient-insights-network.
About No Stomach for Cancer
No Stomach For Cancer, Inc. is a 501(c)(3) nonprofit organization whose mission is to support research and unite the caring power of people worldwide affected by stomach cancer. Serving families across the globe, NSFC advances awareness and education about stomach cancer, including Hereditary Diffuse Gastric Cancer (HDGC), provides a support network for affected families, and supports research for screening, early detection, treatment, and prevention of stomach cancer. Headquartered in Wisconsin and serving families across the globe, No Stomach For Cancer is a worldwide thought leader in stomach cancer awareness and education. For more information, please visit www.nostomachforcancer.org
Invitae Corporation (NYSE: NVTA) is bringing comprehensive genetic information into mainstream medical practice to improve the quality of healthcare for billions of people. As one of the fastest growing genetic information companies, Invitae is advancing the broad potential of genetics, helping to expand its use across the healthcare continuum. The company provides genetic information services for all stages of life – from preconception screening, to newborn diagnosis, to inherited disease screening, to proactive health management – and a unique, rapidly expanding network of patients, hospital systems, and advocacy partners that is moving genetics from one-dimensional testing to complex information management. For more information visit www.invitae.com, or follow us on Twitter, Facebook or LinkedIn.
Invitae Corporation Safe Harbor Statements
This press release contains forward-looking statements within the meaning of the Private Securities Litigation Reform Act of 1995, including statements relating to the benefits and effectiveness of establishing PIN programs; the company's expectations regarding future partnerships with advocacy groups; and the advocacy groups' hosting and launching of the registry programs. 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 ability to utilize the registry information effectively; the company's continued partnerships with advocacy groups; the risk that the advocacy groups may not be able to launch, expand or continue their registry programs; security breaches, loss of data and other disruptions regarding information obtained from the advocacy groups; 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 Annual Report on Form 10-K for the year ended December 31, 2017. These forward-looking statements speak only as of the date hereof, and Invitae Corporation disclaims any obligation to update these forward-looking statements.
SOURCE Invitae Corporation