Rochester

Researchers are collecting data to better understand narcolepsy in children and adolescents through the CATNAP patient registry. This observational study focuses on describing the natural history, presentation, diagnosis, and treatment outcomes of pediatric narcolepsy. The study aims to provide insights over a period of up to four years to improve knowledge about this condition. Participants with narcolepsy under 18 years old are invited to join the registry, which includes 16 active clinical sites and a virtual site to allow participation across the United States. Participants contribute information over up to four years without receiving any experimental treatments, as this is an observational study designed to gather data on disease characteristics and care practices. During the study, participants and their caregivers complete questionnaires and assessments about quality of life, sleep quality, behavior, social support, and caregiver well-being. Data is collected regularly to monitor treatment practices and outcomes, as well as changes in patient and caregiver experiences. This information helps researchers understand the impact of narcolepsy and its management in young patients over time.

Researchers are evaluating the Persona Revision Knee System in patients who have previously undergone primary or revision total knee arthroplasty TKA. This observational study aims to assess the devices performance, clinical benefits, and safety through a retrospective cohort with prospective follow-up. The study involves patients treated with this knee system at up to 20 sites, with a maximum enrollment of 380 participants. The study includes patients implanted with various configurations of the Persona Revision Knee System, including different tibial stems, tibial components, articular surfaces, and femoral components. Participants are identified retrospectively and then invited to participate in prospective data collection at 1, 2, 3, 4, 5, 7, and 10 years after surgery. The device and any compatible instruments used follow the approved instructions for use. Participants will provide data through scheduled follow-up visits over several years, with assessments including the Knee Society Clinical Rating System objective knee score at 2 years as the primary outcome. Secondary measures include adverse events, pain scores, and knee function scores. The study monitors safety and clinical outcomes over time, with a total participation duration potentially extending up to 10 years postoperatively.

This research aims to compare a new method for reducing relapse of problem behavior with the current standard behavioral treatment in individuals with intellectual and developmental disabilities IDD. The study focuses on two key questions how well progressive ratio training reduces response-dependent reinstatement and response-independent reinstatement, which are forms of relapse that can cause treatment failure in community settings. Participants will be assigned to one of two behavioral treatments. One group will receive progressive ratio training PRT, a novel method where reinforcement is provided on a progressively increasing schedule to prevent relapse. The other group will receive the standard approach called differential reinforcement of alternative behavior DRA with extinction, where problem behavior no longer produces reinforcement while alternative communication is reinforced consistently. During the study, participants will engage in treatments applied to proxy responses representing problem behavior. Researchers will assess treatment effectiveness over two years, measuring how well each approach mitigates relapse. They will collect data on proportional and comparative effectiveness to understand which tactic better sustains treatment benefits. This trial will help improve behavioral treatments for individuals with IDD by identifying strategies that protect against relapse.