KLS Foundation Launches First-Ever Kleine Levin Syndrome Patient Registry

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Patient Advocacy Group Partners with Beneufit, Inc. to Advance Rare Disease Research

The Kleine-Levin Syndrome (KLS) Foundation today launched a first-of-its-kind patient registry. The registry will collect and organize information about KLS patients around the world and inform the medical and scientific research communities about KLS symptoms, episode triggers, medications and more – in a way never done before.

Kleine-Levin Syndrome is a rare neurological disorder characterized by recurring periods of excessive amounts of sleep, altered behavior and a reduced understanding of the world. Each episode lasts days, weeks or months during which time all normal daily activities stop. In between episodes, those with KLS appear to be in perfect health with no evidence of behavioral or physical dysfunction. However, individuals function daily with the frightful reality that they could become sick again at any moment. KLS episodes may continue to reoccur for a decade or longer with devastating effects on the patient’s life and family.

“This is a monumental step in the Foundation’s ability to enhance existing knowledge about KLS, support the patient community, and drive forward medical research to better understand and treat KLS,” said president of the KLS Foundation Steve Maier.

The KLS Foundation partnered with digital health company Beneufit, Inc. to create a patient registry to accelerate our collective understanding and treatment of KLS. This global registry is among the most comprehensive and technically sophisticated patient registries in the rare disease space and is a vital step in helping researchers and caregivers understand the complexities of the disease. The registry serves the dual purposes of being a contact database to maintain an accurate list of KLS patients, families and doctors – which will further the Foundation’s ability to support patients and physicians; and a research database to support scientific research and disease understanding by collecting medical histories and specific disease information.

“Our patient registries gather high-quality data outside of the medical record,” said Beneufit CEO Jeff Broderick. “We’ve incorporated a technological feature – a KLS episode tracker – that allows patients and caregivers to record detailed accounts of every episode’s triggers and symptoms. The KLS community has waited fifteen years for this level of detailed data collection.”

After a full year of exploratory work, the KLS Foundation and Beneufit built a heavily customized registry. KLS is such a unique disorder that no existing off-the-shelf product could meet the Foundation’s needs. Data engineers and KLS researchers created a patient registry that meets the highly specific needs of the KLS community and provides scientific researchers with the information they deem most critical to collect.

All patient information will be kept confidential in accordance with Health Insurance Portability and Accountability Act (HIPAA) and European General Data Protection Regulation (GDPR) regulations. The KLS patient registry has been approved by the WCG Institutional Review Board (IRB).

Operational support for the registry is being provided by the PROS Foundation. The registry was developed and launched with funding raised from individual donors to the KLS Foundation.

About the KLS Foundation
The KLS Foundation provides information and support to those diagnosed with KLS and their families. The Foundation exchanges information with patients and the medical community to help in the diagnosis and care of those affected by KLS, and supports research programs. Our goals are to raise awareness, support scientific research, to find effective treatment and ultimately find a cure for Kleine-Levin Syndrome.

About Beneufit
Beneufit delivers evidence-based opportunities to commercial clients and rare-disease foundations by applying 21st century methods and technologies to scientific research.

About the PROS Foundation
PROS (Pathways for Rare and Orphan Studies) is a non-profit organization dedicated to shortening the path to finding effective treatments for rare diseases.

CONTACT: Stephen Maier
President, KLS Foundation
(m) 408 838 4179

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