San Mateo, Calif. (PRWEB) May 22, 2014
PatientCrossroads, pioneer of the groundbreaking CONNECT patient registry platform, has expanded the open availability of disease-specific patient data with the launch of its CONNECT Data Portal. The Data Portal allows any authorized user to see the de-identified patient data that has been collected in the CONNECT registry program, for use in research, developing new treatments, and educating patients and their families.
“PatientCrossroads believes fundamentally in the importance of making patient-reported medical history data openly available to researchers,” said Kyle Brown, founder of PatientCrossroads. “The new Data Portal will enhance data sharing between the millions of people affected by disease and the research community. Patients—the ones who understand their disease best—share their medical history, and anyone who needs this valuable data can access it. In this way, patients can contribute directly to the success to new treatment development.”
Users of the CONNECT Data Portal include medical researchers investigating specific diseases, pharmaceutical and biotechnology companies producing treatments, healthcare providers delivering treatments and advocacy organizations supporting patient populations.
The data is collected in a standardized process directly from patients through the CONNECT registry program. This free registry program allows any disease community, regardless of size, to make detailed medical histories widely available to researchers actively seeking cures. The CONNECT program also addresses an issue uncovered by recent research, which indicates that an estimated 80% of research studies fail to attract enough participants. The CONNECT program provides interested patients and families the opportunity to be connected to clinical trial information.
“By participating in CONNECT and encouraging our families to self-report their medical history, we are helping to define the diversity of rare disease among our worldwide members and to benefit through comparison with other rare and common diseases,” says Cindy Luxhoj Hahn, a scientific advisor and president/CEO of the Alagille Syndrome Alliance (ALGSA). “Compiling this information, combined with cross-comparison, is critical to understanding the history and progression of disease and, ultimately, to expanding the knowledge base that will build a better life for all affected individuals. We are proud to be among the Founding Registry Partners of the CONNECT program.”
“The connection to research through the registry is an incredibly exciting opportunity for our families,” says Joy Meyer, Co-Director of The FPIES Foundation. The Foundation advocates for children and families affected by a rare food allergy called Food Protein Induced Enterocolitis Syndrome (FPIES). “Families around to world may contribute to a central database and put a voice to their child’s experiences with FPIES. In turn, doctors can access and compare data to look for patterns that explain the complexities seen in FPIES.” CONNECT provides the research community access to the tools and data that will accelerate their work, and ultimately spur new treatment options for rare and common disease.
Registration Information
To register for access to the PatientCrossroads Data Portal or to learn about starting a free CONNECT registry, visit http://www.PatientCrossroads.com.
About PatientCrossroads
Since 2005, PatientCrossroads has pioneered the use of patient registries to accelerate therapeutic development and empower patients. PatientCrossroads registry programs connect patients with researchers, advocates and industry organizations working to understand or treat specific diseases and conditions. Dedicated to openly accessible registry programs, PatientCrossroads has been recognized for its efficacy through national and international awards and partnerships. For more information, visit http://www.patientcrossroads.com.