Interdisciplinary Pathways for Improving Spinal Muscular Atrophy (SMA) Pediatric to Adult Transition Practices

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Format

Train the Trainer

Time to Complete

3.50 hr(s).

Release Date

October 31, 2026

Expires On

October 31, 2027

Spinal muscular atrophy (SMA) is characterized by irreversible motor neuron degeneration in the brainstem and spinal cord, resulting in progressive muscle weakness and atrophy. Widespread SMA newborn screening, novel disease-modifying therapies, and early treatment initiation have dramatically improved patient outcomes, with more patients living longer with improved motor function and endurance. Indeed, it is currently estimated that a majority of patients with SMA are teens and adults. However, although considerable progress has been made in disease management for children with SMA, progress for adolescents and adults has not been fully realized, leading to potential gaps in care.

Although the introduction of gene therapies (onasemnogene abeparvovec-xioi and -brve) and RNA splicing modulators (nusinersen and risdiplam) in recent years has been a significant step in SMA management, there is little guidance for initial treatment selection and switching between treatments. Consequently, neurologists managing patients with SMA require a better understanding of the treatment options and monitoring treatment response. In addition, adults living with SMA often require additional support from a variety of healthcare providers, including physical therapists, respiratory therapists, speech therapists, gynecologists, psychiatrists/psychologists, occupational therapists, dentists, and primary care providers. However, knowledge of SMA may be suboptimal across different providers and evidence indicates a lack of care coordination.

Adolescent and adult patients with SMA require coordinated care with an interdisciplinary/multidisciplinary team to realize the benefits of treatment and improved outcomes, and SMA care teams require up to date knowledge of available data as well as strategies to help patients overcome challenges related to access to care. Through this training program, modeled on the CDC Training of Trainers approach, learners will gain the tools and resources they need to implement patient-focused multidisciplinary care strategies for patients with SMA as well as facilitate personalized peer-to-peer learning with their teams.

This educational activity is designed for neuromuscular disease specialists, neurologists, specialty nurse practitioners, specialty physician assistants, physical medicine and rehabilitation specialists, and other members of the SMA interdisciplinary team.

Upon completion of this activity, learners will be able to:
• Identify and implement interdisciplinary solutions to address challenges and care coordination needs of patients with SMA who are transitioning from childhood to adulthood
• Formulate individualized treatment regimens for SMA considerate of clinical symptoms, therapeutic goals, and patient preferences
• Interpret clinical trial data and real-world evidence on treatment initiation and switching between disease-modifying therapies for SMA

This educational activity is presented in collaboration with Rush University Medical Center and the Academy for Continued Healthcare Learning (ACHL).

Supported by an educational grant from Genentech, a member of the Roche Group.

John Brandsema, MD
Attending Physician, Neuromuscular/General Neurology & Electromyography
Children's Hospital of Philadelphia
Philadelphia, PA

Lauren Elman, MD
Professor of Neurology
University of Pennsylvania
Philadelphia, PA

Meghan Moore Burk PhD, PT, DPT
Board Certified Neurological Specialist
Children's Hospital Colorado
Aurora, CO

Samantha Medina, BSN, RN

Ambulatory RN 2 - Neuromuscular

Rush Neurosciences, Department of Neurology

Rush University Medical Center

Chicago, IL

It is the policy of the Interprofessional Continuing Education office at Rush to ensure that its CE activities are independent, free of commercial bias. Therefore, we manage all financial relationships associated with accredited continuing education activities. RUSH asks everyone who has the ability to control or influence the content of an educational activity to disclose information about all of their financial relationships with ineligible companies within the prior 24 months. An ineligible company is an entity whose primary business is producing, marketing, selling, re-selling or distributing healthcare products used by or on patients. There is no minimum threshold; individuals must disclose all financial relationships, regardless of the amount, with ineligible companies. Individuals must disclose regardless of their view of the relevance of relationships to education. Mechanisms are in place to identify and mitigate any potential conflicts of interest prior to the planning, implementation, or evaluation of the continuing education activity. If a financial relationship is identified for the person in control of content, conflict mitigation strategies will be used to mitigate the financial relationship before they assume their role.

Individuals in control of content for this activity have the following relevant financial relationships with ineligible companies to disclose and all financial relationships have been mitigated.

The following financial relationships have been provided:

John Brandsema, MD

Consultant: Alexion, Argenx, Audentes, AveXis/ Novartis, Biogen, Catalyst, CSL Behring, Cytokinetics, Dyne, Edgewise, Entrada, Fibrogen, Fortress, Genentech/Roche, ITF, Janssen, Johnson and Johnson, Lexicon, Marathon, Mesoblast, Momenta, NS Pharma, Percheron, Pfizer, PTC Therapeutics, RegenxBio, Sarepta, Scholar Rock, Solid, Takeda, WaVe

Speaker Bureau: AveXis and Biogen

Clinical Investigator: Alexion, Astellas, Argenx, AveXis/Novartis, Biogen, Biohaven, Catabasis, Catalyst, CSL Behring, Cytokinetics, Dyne, Fibrogen, Genentech/Roche, Ionis, Italfarmaco, Lilly, Janssen, Octapharma, Pfizer, PTC Therapeutics, RegenxBio, Sarepta, Scholar Rock, Solid, Summit, WaVe

Lauren Elman, MD

Consulting Agreements: Biogen, BridgeBio, Dyne, Edgewise, Genentech, Novartis, Scholar Rock, Sarepta, Sanofi

Other: (Member, Data Safety Monitoring Board): Lupin

Meghan Moore Burk PhD, PT, DPT

No financial relationships to disclose.

Samantha Medina, BSN, RN

No financial relationships to disclose

Rush University Medical Center and the Office of Interprofessional Continuing Education staff members, ACHL staff members, and others involved with the planning, development, and review of the content for this activity have no relevant affiliations or financial relationships to disclose.

The content for this activity was developed independently of any ineligible company. All materials are included with permission. The opinions expressed are those of the faculty and are not to be construed as those of the publisher or grantor(s).

This educational activity was planned and produced in accordance with the ACCME Standards for Integrity and Independence in Accredited Continuing Education. Recommendations involving clinical medicine in a continuing medical education (CME/CE) activity must be based on evidence that is accepted within the profession of medicine as adequate justification for their indications and contraindications in the care of patients. All scientific research referred to, reported, or used in CME/CE in support or justification of a patient care recommendation must conform to the generally accepted standards of experimental design, data collection, and analysis.

Unapproved Uses of Drugs/Devices: In accordance with requirements of the FDA, the audience is advised that information presented in this continuing medical education activity may contain references to unlabeled or unapproved uses of drugs or devices. Please refer to the FDA approved package insert for each drug/device for full prescribing/utilization information.

Discussion of scientific information on unapproved uses (SIUU), off-label, investigational, or experimental drug/device use: none

To receive credit, learners are required to view the online activity, and complete the posttest and evaluation. To receive credit, 80% must be achieved on the posttest. A certificate will be immediately available. There is no fee to participate in the activity or for the generation of the certificate.

In support of improving patient care, Rush University Medical Center is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team.

Rush University Medical Center designates this Enduring Material for a maximum of 3.50 AMA PRA Category 1 Credit(s)™. Physicians should claim only credit commensurate with the extent of their participation in the activity.

Successful completion of this CME activity, which includes participation in the evaluation component, enables the learner to earn credit toward the CME of the American Board of Surgery’s Continuous Certification program. It is the CME activity provider’s responsibility to submit learner completion information to ACCME for the purpose of granting ABS credit.

Rush University Medical Center designates this Enduring Material for a maximum of 3.50 nursing contact hour(s).

Physician assistants (PAs) and nurse practitioners (NPs) may participate in this educational activity and earn a certificate of completion as AAPA and AANP accept AMA PRA Category 1 Credits™ through their reciprocity agreements.

Rush University Medical Center is an approved provider for physical therapy (216.000378), respiratory care (195.000038), occupational therapy (224.000220), and speech language pathology and audiology (202.000226) by the Illinois Department of Professional Regulation.

Rush University Medical Center designates this enduring activity for 3.50 continuing education credits.

Successful completion of this CME activity, which includes participation in the evaluation component, and reflection/follow up survey, enables the participant to earn up to 3.50 MOC point in the American Board of Internal Medicine’s (ABIM) Maintenance of Certification (MOC) program. It is the CME activity provider’s responsibility to submit participant completion information to ACCME for the purpose of granting ABIM MOC credit.

By providing your ABIM Diplomate number, you consent to have your participation in this activity submitted to ABIM through the ACCME Program and Activity Reporting System (PARS). ABIM credit will be submitted to PARS on the first day of each month.

ABIM Activity Code: 203772350

Completion of this activity, including the pretest, posttest, and follow-up assessments, qualifies as a medium weight MIPS improvement activity under MACRA and can be claimed as completion of IA_PSPA 28 of an Accredited Safety or Quality Improvement Program in the Quality Payment Program. Clinicians should submit their improvement activities by attestation via the CMS Quality Payment Program website. You will receive additional information after completing the activity and receiving your certificate via email.

Karen Catino
kcatino@achlcme.org

Interdisciplinary Pathways for Improving Spinal Muscular Atrophy (SMA) Pediatric to Adult Transition Practices

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