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Opinion|Videos|June 25, 2024

Managing Clinical Stability in Adults Spinal Muscular Atrophy Patients

Author(s)Lauren Elman, MD, Arun S. Varadhachary, MD, PhD , Thomas Crawford, MD

Clinical experts in spinal muscular atrophy (SMA) address the issue of patient disengagement from healthcare services, which can occur due to a perceived lack of disease progression or stabilization, leading to undetected disease advancement and increased risk to patients, and provide recommendations for encouraging patients to re-engage with medical care.

Episodes in this series

Video 1 - 5 KOLs are featured in "Clinical Features and Phenotypes of Spinal Muscular Atrophy"

EP. 1 Clinical Features and Phenotypes of Spinal Muscular Atrophy

Video 2 - 5 KOLs are featured in "Natural History of Spinal Muscular Atrophy"

EP. 2 Natural History of Spinal Muscular Atrophy

Video 3 - 5 KOLs are featured in "Presentation of Adult Spinal Muscular Atrophy in Clinics"

EP. 3 Presentation of Adult Spinal Muscular Atrophy in Clinics

Video 3 - 5 KOLs are featured in "Transitions of Care: Moving Spinal Muscular Atrophy Patients from Pediatric/Adolescent Care to Adult Clinics"

EP. 4 Transitions of Care: Moving Spinal Muscular Atrophy Patients from Pediatric/Adolescent Care to Adult Clinics

Video 5 - 5 KOLs are featured in "Key Players in Transitioning Patients with SMA from Pediatric Care to Adult Health Care"

EP. 5 Key Players in Transitioning Patients with SMA from Pediatric Care to Adult Health Care

Video 5 - 5 KOLs are featured in "Managing Clinical Stability in Adults Spinal Muscular Atrophy Patients"

EP. 6 Managing Clinical Stability in Adults Spinal Muscular Atrophy Patients

5 KOLs are featured in this series.

EP. 7 Treatments Approved for Treatment of Spinal Muscular Atrophy

5 KOLs are featured in this series.

EP. 8 Factors Guiding Treatment Selection in Adult Spinal Muscular Atrophy

5 KOLs are featured in this series.

EP. 9 Switching Treatments in Spinal Muscular Atrophy

5 KOLs are featured in this series.

EP. 10 Determining Treatment Success in Spinal Muscular Atrophy

5 KOLs are featured in this series.

EP. 11 Counseling Patients About Treatment Outcomes in Spinal Muscular Atrophy

5 KOLs are featured in this series.

EP. 12 Real-World Data and Stability with Nusinersen in Adult Patients with Spinal Muscular Atrophy

5 KOLs are featured in this series.

EP. 13 Real-World Data for Risdiplam in Adult Patients with Spinal Muscular Atrophy

5 KOLs are featured in this series.

EP. 14 Transition of Care in Young Adults With Spinal Muscular Atrophy

5 KOLs are featured in this series.

EP. 15 Recommendations for Clinicians Taking Care of Patients with SMA

SMA is a disease that can be characterized by prolonged periods of perceived clinical stability, and although this likely does not reflect pathological stability since it feels to the patient as if nothing is happening, it can result in disengagement from healthcare. Is this something that you have encountered in your practice?
1. How big is this danger for patients with SMA?
2. What suggestions do you have to bring back these patients?

How do you discuss the progressive nature of SMA with your adult patients?

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