Claritas Genomics, a Cambridge, Mass.-based genetic diagnostic laboratory, and Genetic Alliance, a nonprofit health advocacy organization based in Wash. D.C., announced a partnership to help patients and families find and participate in relevant research opportunities that will advance understanding of individual genetic disorders and development of new therapies.
Claritas, in collaboration with patient advocacy organizations, will use the Platform for Engaging Everyone Responsibly (PEER), created by Genetic Alliance and Private Access, to connect the patient’s genetic test and exome results to their clinical information and enable families to share information between the clinical and research environments, all the while keeping the families’ interests at the forefront.
Translational research provides critical information that can illuminate underlying biology and lead to a better understanding of genetic disorders, yet research opportunities are often not easy for patients to find, and it can be difficult to use information gathered longitudinally in the clinical context to continually inform the research enterprise. Moreover, individual patients often do not benefit from research directly, as research is typically performed using de-identified, aggregate data and patients therefore cannot be informed of outcomes. Using the PEER system, patients receiving Claritas clinical testing services can choose what information to share with relevant research initiatives, and receive individualized relevant findings.
"The Claritas mission is to bring answers and resources to children affected with complex genetic disorders, and do so quickly. Now is the time to offer patients and caregivers the opportunity to engage in truly patient-centered genomics research,” said Patrice Milos, Ph.D., Claritas Genomics president and CEO. “We should ‘free the patient’ using this system, acknowledging the patient's preferences regarding privacy, risk/benefit considerations, their timeline and willingness to share their data. Together, let’s deliver dynamic and granular consent processes that enable patients to help themselves and others."
The PEER participants determine who can see and/or use their data and they can change those settings over time. The participant can also indicate that they wish to be contacted for further opportunities. Communities customize the PEER portal on their website, engaging guides local to the community.