Parents of Children with Narcolepsy Invited to Participate in Registry
Remote Participation Model Allows People to Enroll from Almost Anywhere in the World
August 8th 2022, London, Ontario, Canada—Children with pediatric narcolepsy and their caregivers can now take part in a patient registry to help researchers and clinicians better understand the condition. Pulse Infoframe, which specializes in patient registries for rare diseases, launched the registry in 2020 and has 16 active clinical sites. Today, the study is expanding into its next phase, a remote model that widens participation and allows input from participants and clinicians from almost anywhere in the world at their convenience.
The patient registry, called “Children, Adolescents and their providers: The Narcolepsy Assessment Partnership” (CATNAP™ for short), is now actively recruiting and will ask willing patients and their providers to share information on different areas of their lives related to narcolepsy. This includes diagnostic, medical and treatment history, other conditions, and how a person’s narcolepsy progresses.
In addition, providers will be able to use the data to answer questions about how the patient’s illness affects well-being, social support, sleep, and work. Clinicians, in turn, will provide information on signs, symptoms, testing, and other data at diagnosis, as well as medical records, to improve understanding of the natural history of pediatric narcolepsy.
“We know patients and providers may have many concerns about how these data are cared for,” says Dr. Femida Gwadry-Sridhar, founder and CEO of Pulse Infoframe. “In the medical field, the standards for safeguarding data are extremely stringent. In addition, the patient’s and provider’s identities are separated from the data before any data are shared with researchers.”
Pediatric narcolepsy has detrimental effects on all areas of a child’s life, including school, social circles, extra-curricular activities, and self-esteem. Taking part in a patient registry designed for this condition will help educate patients and caregivers, inform clinical decision-making, and potentially contribute to the development of new treatment strategies with a better understanding of patient impact. To learn more about participating in this registry, visit https://bit.ly/CATNAP-Registry
About Pulse Infoframe
Pulse Infoframe is a real-world evidence generation, health informatics and insights company that provides a technology and services platform designed to extract, curate, analyze and disseminate evidence-based conclusions that improve the quality of people’s lives. Pulse Infoframe provides a full solution for registries, natural history studies and a range of other observational and regulatory grade studies. With provider relationships for patient access, Pulse Infoframe ensures that insights, evidence and publication results are disseminated across the ecosystem, including advocacy organizations, key opinion leaders, researchers, and sponsors. Learn more at www.pulseinfoframe.com.
