Megan Lenz

Cure Spinal Muscular Atrophy

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Jill Jarecki

Cure Spinal Muscular Atrophy

Lisa Belter

Cure Spinal Muscular Atrophy

Mary Ann Curry

CURE International UK

Rosángel Cruz

Cure Spinal Muscular Atrophy

Mary Schroth

Cure Spinal Muscular Atrophy

Kenneth Hobby

Cure Spinal Muscular Atrophy

Brian J. Gates

Washington State University Spokane

Jeffrey A. Clark

American Society of Consultant Pharmacists

Jacqueline Glascock

CURE International UK

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Cure Spinal Muscular Atrophy

CURE International UK

Sudan Meteorological Authority

Ibero American University

Washington State University Spokane

Washington State University

Visiting Nurse Association

PeaceHealth St. John Medical Center

Marymount University

Indiana University

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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)

BMC Pediatrics (2021)

Mary Ann Curry Rosángel Cruz Lisa Belter Mary Schroth Megan Lenz

Spinal Muscular Atrophy (SMA), a leading genetic cause of death in infants, is an autosomal recessive neuromuscular disease characterized by progressive muscle weakness and atrophy. While early diagnosis of SMA is critical to modifying disease progression and improving outcomes, serious diagnostic delays persist. There is a need to improve SMA awareness, screening, and referral patterns.

Neuromuscular disease

10.1186/s12887-021-02692-2

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Citations (6)

Cure SMA and our patient community celebrate the first approved drug for SMA

Gene Therapy (2017)

Jacqueline Glascock Megan Lenz Kenneth Hobby Jill Jarecki

10.1038/gt.2017.39

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Citations (12)

Medication Regimen Complexity in Patients Receiving Consultant Pharmacy Services in Home Health Care

The Senior Care Pharmacist (2020)

Megan Lenz Jeffrey A. Clark Brian J. Gates

An interprofessional, team-based approach has become common in a variety of settings. However, consultant pharmacist participation in home health care (HHC) has been limited. To evaluate a potential need for pharmacists in HHC, the objective of this project was to document the medication complexity of patients seen by an established HHC consultant pharmacist service. This retrospective review reports on medication regimen complexity in 79 patients receiving this service using the Patient-Level Medication Regimen Complexity Index (MRCI) tool. The average MRCI score was 30 (± 15 standard deviation), suggesting a high level of medication regimen complexity in this population. High scores have been correlated with increased potential adverse drug events, 30-day hospital readmissions, and reduced adherence. Further research is needed for both the utilization of consultant pharmacists in HHC and the use of MRCI in identifying HHC patients needing pharmacist services.

Regimen

Medication therapy management

Home health

10.4140/tcp.n.2020.81

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Citations (2)

Assessment of Referral Patterns, Referral Barriers, and Diagnostic Patterns in Spinal Muscular Atrophy (SMA) Amongst Pediatricians

PEDIATRICS (2021)

Mary Ann Curry Rosángel Cruz Lisa Belter Megan Lenz Jill Jarecki

10.1542/peds.147.3ma1.64

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Assessment of Referral Patterns, Referral Barriers, and Diagnostic Patterns in Spinal Muscular Atrophy (SMA) Amongst Pediatricians

Mary Ann Curry Rosángel Cruz Lisa Belter Megan Lenz Jill Jarecki

Objective: Cure SMA initiated a study to further understand referral patterns and barriers impacting the pediatric-specialty care interface that may contribute to existing diagnostic delays in spinal muscular atrophy (SMA). Diagnostic awareness of SMA was also assessed. The study is part of a broader effort by the Cure SMA Industry Collaboration to further understand diagnostic delays in SMA. Background: SMA is an autosomal recessive neuromuscular disease characterized by progressive muscle weakness and atrophy. Clinical trial data suggests that early treatment is critical to improving survival, modifying disease progression, and is expected to alter the phenotype. Methods: Cure SMA conducted a survey gauging referral patterns, referral barriers, and diagnostic patterns in SMA among pediatricians. It was distributed …

10.1542/peds.147.3_meetingabstract.64

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