Genetics company promotes rare disease registries

Posted - June 2018 in Living with HSP - Management & Treatment News

Connecting with research, clinical trials management

 

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 SP Foundation in the USA, with whom this Foundation partners and collaborates, is one of the five organisations to join the PIN program.

 

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.

 

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