Search Results - "Belter, Lisa"

Quality of life data for individuals affected by spinal muscular atrophy: a baseline dataset from the Cure SMA Community Update Survey by Belter, Lisa, Cruz, Rosángel, Jarecki, Jill

“…Individuals and/or caregivers of individuals affected by spinal muscular atrophy (SMA) completed the 2019 Cure SMA Community Update Survey, online, assessing…”
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Knowledge of genetic test results among caregivers and individuals with spinal muscular atrophy by Belter, Lisa, Mazzella, Allison, O'Brien, Shannon, Jarecki, Jill

“…Spinal muscular atrophy (SMA) is a progressive recessive genetic disease. Early identification is critical for achieving maximal treatment benefit. Survival…”
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Telemedicine Use, Comfort, and Perceived Effectiveness in the Spinal Muscular Atrophy Community by Peterson, Ilse S, Belter, Lisa T, Curry, Mary A, Jarecki, Jill

“…Telemedicine may increase access to clinical care, particularly for mobility-limited communities such as the spinal muscular atrophy (SMA) community. However,…”
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"I have SMA, SMA doesn't have me": a qualitative snapshot into the challenges, successes, and quality of life of adolescents and young adults with SMA by Mazzella, Allison, Curry, Mary, Belter, Lisa, Cruz, Rosángel, Jarecki, Jill

“…With the approval of three treatments for spinal muscular atrophy (SMA) and several promising therapies on the horizon, the SMA adolescent and young adult…”
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Evaluating Perceived Fatigue within an Adult Spinal Muscular Atrophy Population by Belter, Lisa, Peterson, Ilse, Jarecki, Jill

“…Introduction Spinal muscular atrophy (SMA) is an autosomal recessive neuromuscular disease characterized by progressive muscle weakness and atrophy. While…”
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Awareness screening and referral patterns among pediatricians in the United States related to early clinical features of spinal muscular atrophy (SMA) by Curry, Mary, Cruz, Rosángel, Belter, Lisa, Schroth, Mary, Lenz, Megan, Jarecki, Jill

“…Spinal Muscular Atrophy (SMA), a leading genetic cause of death in infants, is an autosomal recessive neuromuscular disease characterized by progressive muscle…”
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The availability, functionality, and quality of mobile applications supporting medication self-management by Bailey, Stacy Cooper, Belter, Lisa T, Pandit, Anjali U, Carpenter, Delesha M, Carlos, Eamon, Wolf, Michael S

“…To systematically review mobile applications currently available to patients to support outpatient medication self-management. Three online stores were…”
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Assessment of Barriers to Referral and Appointment Wait Times for the Evaluation of Spinal Muscular Atrophy (SMA): Findings from a Web-Based Physician Survey by Curry, Mary A., Cruz, Rosángel E., Belter, Lisa T., Schroth, Mary K., Jarecki, Jill

“…Background Spinal muscular atrophy (SMA) is an autosomal recessive neuromuscular disease characterized by progressive muscle weakness and atrophy. Clinical…”
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Effects of the COVID-19 Pandemic on SMA Screening and Care: Physician and Community Insights by Curry, Mary, Peterson, Ilse, Belter, Lisa, Sarr, Fatou, Whitmire, Sarah, Schroth, Mary, Jarecki, Jill

“…Objective As part of efforts to reduce diagnostic delays and enhance clinical trials, Cure SMA evaluated the effects of COVID-19 on SMA care and clinical trial…”
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Assessing the impact of grief on quality of life, work productivity, and health outcomes for parents bereaved from SMA: A study protocol by Riley, Abigail G, Mulé, Christina M, Lerner, Debra, Belter, Lisa, O'Toole, Colleen McCarthy, Kowal, Stacey, Fox, David, Shapouri, Sheila, Vesel, Tamara, Lavelle, Tara A

“…Background U.S. cost-effectiveness recommendations suggest that analyses should include all costs and effects relevant to the decision problem [1]. However, in…”
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Older Adult Preferences of Mobile Application Functionality Supporting Medication Self-Management by Russell, Andrea M., Smith, Samuel G., Bailey, Stacy C., Belter, Lisa T., Pandit, Anjali U., Hedlund, Laurie A., Bojarski, Elizabeth A., Rush, Steven R., Wolf, Michael S.

“…Health systems and insurers alike are increasingly interested in leveraging mHealth (mobile health) tools to support patient health-related behaviors including…”
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Economic burden of spinal muscular atrophy: an analysis of claims data by Belter, Lisa, Cruz, Rosángel, Kulas, Sierra, McGinnis, Emily, Dabbous, Omar, Jarecki, Jill

“…Background: Spinal muscular atrophy (SMA) is a rare genetic neuromuscular disease. Objective: Characterize direct costs associated with SMA management. Data…”
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The Cure SMA Clinical Trial Experience Survey: A Study of Trial Participant Perspectives on Clinical Trial Management and Patient-Centric Management Practices by Peterson, Ilse S., Mazzella, Allison J., Belter, Lisa T., Curry, Mary A., Cruz, Rosángel E., Jarecki, Jill

“…Introduction Understanding clinical trial experiences can illuminate opportunities to optimize trial design and management, with potential benefits for…”
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An overview of the Cure SMA membership database: Highlights of key demographic and clinical characteristics of SMA members by Belter, Lisa, Cook, Suzanne F, Crawford, Thomas O, Jarecki, Jill, Jones, Cynthia C, Kissel, John T, Schroth, Mary, Hobby, Kenneth

“…The Cure SMA database is one of the largest patient reported databases for people affected with SMA. The purpose of this study was to examine a subset of…”
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Self-reported SMN2 Copy Number and Current Motor Function from the Cure SMA Patient Database (2412) by Belter, Lisa, O’Brien, Shannon, Jarecki, Jill

“…Abstract only…”
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EQ-5D and HUI2 Results from the Cure SMA Annual Community Update Survey (2419) by Belter, Lisa, Cruz, Rosangel, Jarecki, Jill

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Assessment of Transition Plan Implementation and Provider Engagement Amongst Adults Affected by Spinal Muscular Atrophy (SMA) (P2-8.011) by Eisenman, Lauren, Curry, Mary, Belter, Lisa, Jarecki, Jill, Schroth, Mary

“…Abstract only…”
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Comparing Spinal Muscular Atrophy (SMA) outcomes between a patient-reported membership database and a clinical data registry (P2-8.012) by Belter, Lisa, Whitmire, Sarah, Curry, Mary, Schroth, Mary

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Health Utility Index Scores in treated and untreated patients with Spinal Muscular Atrophy: Findings from the 2019 Cure SMA Community Update Survey (4564) by Belter, Lisa, Cruz, Rosangel, Jarecki, Jill

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Assessment of Awareness of the Early Clinical Features of Spinal Muscular Atrophy (SMA) Amongst Neurology and Child Neurology Residents and Fellows (1164) by Cruz, Rosangel, Belter, Lisa, Jarecki, Jill

“…Abstract only…”
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