NEW HAVEN, Conn., Jan. 14, 2019 /PRNewswire/ — RogCon Biosciences, Inc., (RogCon), a biotechnology company leading the discovery and development of novel treatments for patients suffering from SCN2A (Nav1.2) mutations, has partnered with Prometheus Research to support the creation of a scalable clinical data registry (CDR) that will assist a planned international natural history study of patients with SCN2A mutations being conducted by top neurologists and epileptologists around the world, including Dr. Katherine Howell of The Royal Children’s Hospital as lead investigator. Mutations of the SCN2A gene are known to cause several neurological disorders including epilepsy, autism and a number of other neuro-related conditions, affecting tens of thousands of people worldwide.
Prometheus’ CDR solution will enable the investigators of this SCN2A natural history study to collect complex data, faciliate multisite protocols, and ultimately aid in understanding the symptomatology associated with SCN2A mutations and how patients progress with their disease over time. At present, there is no corrective therapy or cure specifically for SCN2A patients, and all drugs being used are non-selective treatments that only offer relief for select patient symptoms. The information from the natural history study and the Prometheus CDR will be essential for advancing the current standard of care, and will provide critical aid to the development of new disease-modifying treatments, such as those currently being pursued by RogCon.
“We are excited to work with Prometheus on this critical initiative, and to support the immensely-valuable international natural history study on SCN2A mutations,” said Alex Nemiroff, CEO and co-founder of RogCon. “The data generated from this study is paramount to the missions of all those seeking to better treat this disease, and at RogCon we acknowledge the value of Prometheus’ data platform, technologies, and expertise to help bring a disease-modifying therapy to the many patients and families suffering from SCN2A mutations.”
The SCN2A study leverages Prometheus’ RexRegistry platform, which includes end-to-end support for data acquisition, curation, enrichment, and analysis. RexRegistry can accommodate changing data standards, information models, and regulatory requirements with minimal technical effort and without affecting the quality or availability of existing data. It is designed to adapt to evolving needs of data stewards and their initiatives by offering multiple channels through which data can be acquired and reused, and by ensuring both the data and the infrastructure itself can remain usable for decades to come.
Prometheus’ CEO, Dr. Leon Rozenblit, commented: “We believe the potential for better understanding SCN2A mutations is enormous and our team at Prometheus is delighted that our expertise and technologies will be useful in advancing this critical initiative. We are always excited to help create high-quality data assets that accelerate discovery in a high-impact area, such as neurological diseases, and in particular, SCN2A.”
About Prometheus Research
Prometheus Research is the principal informatics partner to organizations engaged in ambitious translational research endeavors and national quality-improvement initiatives. Their research-grade clinical registry solutions leverage open technologies and standards to deliver unparalleled versatility when acquiring data and exceptional quality when analyzing and repurposing data. Prometheus helps forward-thinking health institutions build data assets today that will advance the state of care for future generations. www.prometheusresearch.com
About RogCon Biosciences
RogCon is a biotechnology company pioneering the discovery and development of novel therapeutics for children suffering from SCN2A mutations, where no solutions currently exist. Mutations in SCN2A are the most common cause of neurodevelopmental disease including epilepsy and autism, and there are numerous associated comorbidities. RogCon has amassed a group of world experts in genetic epilepsy research and drug development, with a focus on SCN2A, including collaborations with Ionis Pharmaceuticals, Inc. and The Florey Institute of Neuroscience. To learn more, please visit www.rogcon.com
SOURCE Prometheus Research