Rochester

Researchers are working to better understand narcolepsy in children and adolescents by collecting detailed information about the disease through a patient registry called CATNAP. This registry aims to track the natural history of pediatric narcolepsy, describe how the condition presents and is diagnosed, and study treatment practices and outcomes over a period of up to 4 years. The study involves multiple active clinical sites as well as a virtual site that allows participation from anywhere in the United States. The study does not involve specific treatments but focuses on gathering comprehensive data from children and adolescents diagnosed with narcolepsy. Participants and their healthcare providers contribute information about symptoms, diagnosis, treatment regimens, and any changes in treatment over time. This registry is designed to be accessible in English and requires informed consent to participate. Participants will be followed for up to 4 years during which researchers will collect and analyze data to improve understanding of pediatric narcolepsy. The study involves completing consent forms and participating in registry activities, which may include providing health information and updates over time. This long-term follow-up helps researchers learn more about how narcolepsy develops and is managed in young patients.

Researchers are evaluating the performance, clinical benefits, and safety of the Persona Revision Knee System in patients who have previously undergone primary or revision total knee arthroplasty (TKA). This study uses a multicenter, single-arm, retrospective cohort design with prospective follow-up to gather data. The study includes patients with knee conditions such as rheumatoid arthritis, osteoarthritis, traumatic arthritis, and other joint issues treated with this knee system. The study focuses on the Persona Revision Knee System implants and related devices used according to their instructions for use. Patients who had the system implanted will be identified retrospectively and invited for prospective follow-up visits at 1, 2, 3, 4, 5, 7, and 10 years after surgery. The device became commercially available in late 2019, so past treatments follow standard care. Up to 20 sites will participate with a maximum of 380 patients enrolled. Participants will attend scheduled follow-up visits involving clinical evaluations to measure knee function using the 1989 Knee Society Clinical Rating System objective knee score over 2 years. Researchers will monitor performance improvements, safety, and clinical benefits of the knee system. Data collection will help assess patient outcomes and device effectiveness with long-term monitoring planned up to 10 years.

This research investigates ways to reduce relapse of problem behaviors in individuals with intellectual and developmental disabilities. The study compares a new method called progressive ratio training (PRT) with the current standard behavioral treatment approach known as differential reinforcement of alternative behavior (DRA) with extinction. The goal is to see how well PRT can prevent relapse caused by extinction errors, which are a common challenge when treatments are used outside controlled settings, such as at home. The study involves two treatment approaches. Progressive ratio training provides reinforcement on an increasing schedule, where the effort required to earn a reward grows each time reinforcement is given. The standard approach, differential reinforcement of alternative behavior with extinction, stops reinforcement for problem behavior while reinforcing a proxy communication behavior consistently. Both methods will be tested to see how effectively they prevent different types of relapse: response-dependent and response-independent reinstatement. Participants will be observed as they respond to these behavioral treatments in a translational-treatment model that mimics real-world conditions. Researchers will measure treatment effectiveness over two years by monitoring the rate of problem behavior relapse. The findings aim to improve behavioral treatments for individuals with intellectual and developmental disabilities, making them more successful in community settings and enhancing participants' quality of life.