NEW YORK (GenomeWeb)ㄧInvitae announced it has expanded its Patient Insights Network by collaborating with five advocacy groups that are launching registries focused on various genetic conditions.
The advocacy organizations joining the network are: No Stomach for Cancer, the Bow Foundation, National Tay Sachs & Allied Diseases Association (NTSAD), the RASopathies Network, and the Spastic Paraplegia Foundation. "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," Invitae said in a statement.
As part of Invitae’s Patient Insights Network, which currently covers more than 400 health conditions, patients can build datasets tracking their medical history, the treatments and diagnostics they've received, as well as their quality of life and costs of living with these conditions. Patients, advocates, clinicians and researchers, in turn, will have access to deidentified data for advancing new drugs, and to patient communities for enrollment in clinical trials.
The advocacy organization No Stomach for Cancer will launch a Global Gastric Cancer Registry within which patients, advocates, clinicians, and researchers can share and access deidentified data on different stomach cancers. The Bow Foundation will launch a registry for patients with GNAO1 pediatric disorders, which cause developmental delays and neurological symptoms in fewer than 100 people in the world. NTSAD will advance a registry for collecting data on GM2 Gangliosidoses, which include neurodegenerative lysosomal disorders, Tay Sachs, and Sandhoff disease.
The RASopathies Network will collect data on rare genetic conditions associated in the Ras-MAPK pathway, and which cause developmental delays, heart defects, and neurological problems. The Spastic Paraplegia Foundation is creating a network of families impacted by primary upper motor neuron disorders, Hereditary Spastic Paraplegia or Primary Lateral Sclerosis.