2 results match your criteria: "University of Rochester Center for Health + Technology (CHeT)[Affiliation]"
Patient- and caregiver-reported impact of symptoms in Duchenne muscular dystrophy.
Muscle Nerve
July 2024
University of Rochester Center for Health + Technology (CHeT), Rochester, New York, USA.
Introduction/aims: To better understand the disease burden faced by individuals with Duchenne muscular dystrophy (DMD) of all ages and elucidate potential targets for therapeutics, this study determined the prevalence and relative importance of symptoms experienced by individuals with DMD and identified factors associated with a higher disease burden.
Methods: We conducted qualitative interviews with individuals with DMD and caregivers of individuals with DMD to identify potential symptoms of importance to those living with DMD. We subsequently performed a cross-sectional study to assess which symptoms have the highest prevalence and importance in DMD and to determine which factors are associated with a higher disease burden.
Patient-Reported Impact of Symptoms in Friedreich Ataxia.
Neurology
February 2023
From the University of Rochester Center for Health + Technology (CHeT) (J.S., B.C., S.R., A.V., E.W., J.W., C.H.), NY; Stritch School of Medicine (D.A.), Loyola University Chicago, IL; Department of Neurology (N.D., C.H.), University of Rochester, NY; Pittsford Sutherland High School (J.H.), NY; PepGen Inc. (J.L.), Boston, MA; Children's Hospital of Philadelphia (CHOP) (D.R.L., C.P.), PA; University of Florida College of Medicine (S.H.S.), Gainesville; Friedreich's Ataxia Research Alliance (FARA) (S.W.), Downingtown, PA; and Princeton University School of Public and International Affairs (C.Z.), NJ.
Background And Objectives: To determine the prevalence and relative importance of symptoms experienced by children and adults with Friedreich ataxia (FA) and to identify factors associated with a higher burden of disease.
Methods: We conducted qualitative interviews with individuals with FA and caregivers of pediatric individuals with FA to identify potential symptoms of importance to those living with FA. We subsequently performed a cross-sectional study to assess which symptoms have the highest prevalence and importance in FA and to determine which factors are associated with a higher burden of disease.