Cure SMA Clinical Care Session 2021 Virtual Conference
JOINTLY PROVIDED BY
University of Wisconsin–Madison Interprofessional Continuing Education Partnership (ICEP)
and
Cure SMA
TARGET AUDIENCE
This activity is intended for the health care team providers who diagnose and care for people affected by SMA, including physicians, nurse practitioners, physician assistants and nurses, pediatric and adult specialists including neurologists, pulmonologists, rehabilitation medicine, genetics, orthopedic surgery, palliative care, physical and occupational therapists, speech and language pathologists, pharmacists, nutritionists, genetic counselors, social workers, respiratory therapists, and trainees in the above disciplines.
ACTIVITY OBJECTIVES
After completing this activity, participants and their health care team should be better able to:
- Demonstrate knowledge of multidisciplinary team roles and responsibilities in care management to optimize SMA outcomes
- Describe the existing and evolving treatment options for patients with SMA
- Describe the impact of new treatments on the SMA phenotype
- Analyze the treatment options for management of infants with SMA identified by SMA newborn screening
- Demonstrate knowledge of the risk for mental health complications of SMA
- Describe the application of mental health screening tools for SMA outpatient use
ELEMENTS OF COMPETENCE
This activity has been designed to change learner competence and performance and focuses on the American Board of Medical Specialties areas of patient care and procedural skills, medical knowledge, practice-based learning and improvement, interpersonal and communication skills, professionalism, and systems-based practice. This activity also focuses on the interprofessional competencies of values/ethics for interprofessional practice, interprofessional communication, and teams/teamwork.
AM | |
11:00-11:15 | Welcome and CMO Update Mary Schroth, MD, Chief Medical Officer, Cure SMA |
11:15-11:30 | Cure SMA Community Database Outcomes Lisa Belter, MPH, Director, Research Data Analytics, Cure SMA |
11:30-12:30 | Special Session: Ethics Moderator: Julie Parsons, MD, Pediatric Neurologist at Children's Hospital Colorado Panelists: Tom Crawford, MD, Pediatric Neurologist, Johns Hopkins Hospital John Brandsema, MD, Pediatric Neuromuscular Neurologist, Children's Hospital of Philadelphia Bakri Elsheikh, MD, Associate Professor, Neurology, Neuromuscular Medicine, and Clinical Neurophysiology at The Ohio State University Wexner Medical Center Ethicist: Brian Jackson, MD, MA, Pediatric ICU Attending Physician, Children’s Hospital Colorado |
PM | |
12:30-12:45 | Single Institution Experience of Nusinersen Treatment of Adult Patients With Spinal Muscular Atrophy Meghan Moore, PT, DPT, NCS, Physical Therapist, Johns Hopkins Children’s Center |
12:45-1:00 | Feasibility of Testing Differences in Swallowing Physiology and Function Between Treated and Untreated Patients With SMA 1: Natural History vs. Nusinersen Katlyn McGrattan, PhD, CCC-SLP, Assistant Professor, Department of Speech-Language-Hearing Science, University of Minnesota
CONTINUING EDUCATION CREDIT WILL NOT BE GRANTED FOR THIS PRESENTATION. |
1:00-1:15 | Clinical Efficacy and Safety of Risdiplam Use as Combination Therapy in Spinal Muscular Atrophy (SMA) Patients Post Onasemnogene-Abeparvovec-Xioi (Onasemnogene) and/or Nusinersen Use Kapil Arya, MBBS, FAAP, FANA, Assistant Professor, Division of Pediatric Neurology, Department of Pediatrics, Arkansas Children’s Hospital, University of Arkansas for Medical Sciences Paul Drake, MD, Pediatric Neurologist, Division of Pediatric Neurology, Department of Pediatrics, Arkansas Children’s Hospital, University of Arkansas for Medical Sciences |
1:15-1:30 | Nusinersen by Subcutaneous Catheter for Spinal Muscular Atrophy Karlla Brigatti, MS, CGC, Research Operations Director, Clinic for Special Children |
1:30-2:00 | Break |
2:00-3:00 | MUSCULOSKELETAL PANEL
Bracing for Scoliosis in Spinal Muscular Atrophy: Is It Efffective? Brian Snyder, MD, PhD, Professor of Orthopaedic Surgery, Harvard Medical School and Research Professor of Bioengineering at Boston University
20-Year Experience With Segmental Sublaminar Instrumentation for Guided Growth in Early Onset Scoliosis Samuel R. Rosenfeld, MD, Orthopedic Surgeon, Children’s Health of Orange County Children's Hospital
Hip Pain Assessment in Patients With Spinal Muscular Atrophy: Prevalence, Intensity, Interference, and Associated Factors Amy Xu, BS, Medical Student, Johns Hopkins University School of Medicine
Development of a Competency-Based Educational Program for Spinal Muscular Atrophy Physical Therapists (STEP-IN) Jacqueline Montes, PT, EdD, Associate Professor of Rehabilittion and Regenerative Medicine, Columbia University Medical Center |
3:00-4:30 | Special Session: Mental Health Screening and Management Tools Moderator: Vamshi Rao, MD, Attending Physician, Neurology, Lurie Children’s Hospital of Chicago; Assistant Professor of Pediatrics (Neurology and Epilepsy), Northwestern University Feinberg School of Medicine Speakers and Panelists: Pamela Mosher, MD, Psychiatrist, University Health Network (UHN), Toronto, Ontario, Canada Vanessa Battista, RN, MS, CPNP-PC, CHPPN, Palliative Care Pediatric Nurse Practitioner at Children's Hospital of Philadelphia Diane Murrell, LCSW, Social Worker at Texas Children's Hospital in Houston Al Freedman, PhD, Psychologist, Independent Practice, Philadelphia |
4:30-5:30 | SMA NEWBORN SCREENING PANEL
Integrating a Pilot Newborn Screening for Spinal Muscular Atrophy into the Australian Public Healthcare System Arlene D’Silva, PhD, Researcher, The University of New South Wales, Sydney, Australia
Statewide Newborn Screening for Spinal Muscular Atrophy: The Wisconsin Experience Mei Baker, MD, Professor, Department of Pediatrics, Division of Genetics & Metabolism, University of Wisconsin School of Medicine and Public Health
The Clinicians and Families Experience With the First Year of Newborn Screening in Colorado and Wyoming Melissa Gibbons, MS, CGC, Genetic Counselor at Children's Hospital Colorado
Investigating the SMA Patient Community’s Attitudes Towards Fetal Therapy Marisa Schwab, MD, General Surgeon, University of California, San Francisco |
5:30 | Adjourn |
This activity is being held virtually.
PRESENTERS
Kapil Arya, MBBS, FAAP, FANA, Assistant Professor, Division of Pediatric Neurology, Department of Pediatrics, Arkansas Children’s Hospital, University of Arkansas for Medical Sciences, Little Rock, AR
Mei Baker, MD, Professor, Department of Pediatrics, Division of Genetics & Metabolism, University of Wisconsin School of Medicine and Public Health, Madison, WI
Vanessa Battista, RN, MS, CPNP-PC, CHPPN, Palliative Care Pediatric Nurse Practitioner, Children's Hospital of Philadelphia, Philadelphia, PA
Lisa Belter, MPH, Director, Research Data Analytics, Cure SMA, Elk Grove Village, IL
John Brandsema, MD, Pediatric Neuromuscular Neurologist, Children's Hospital of Philadelphia, associated with the Perelman School of Medicine at The University of Pennsylvania, Philadelphia, PA
Karlla Brigatti, MS, CGC, Research Operations Director, Clinic for Special Children, Strasburg, PA
Thomas Crawford, MD, Pediatric Neurologist, Johns Hopkins Hospital, associated with Johns Hopkins University, Baltimore, MD
Paul Drake, MD, Pediatric Neurologist, Division of Pediatric Neurology, Department of Pediatrics, Arkansas Children’s Hospital, University of Arkansas for Medical Sciences, Little Rock, AR
Arlene D’Silva, PhD, Researcher, The University of New South Wales, Sydney, Australia
Bakri Elsheikh, MD, Neurologist, Neuromuscular Medicine, and Clinical Neurophysiology at The Ohio State University Wexner Medical Center, Columbus, OH
Al Freedman, PhD, Psychologist, Independent Practice, Philadelphia, PA
Melissa Gibbons, MS, CGC, Genetic Counselor at Children's Hospital Colorado, Aurora, CO
Brian Jackson, MD, MA, Pediatric ICU Attending Physician, Children’s Hospital Colorado, Aurora, CO
Katlyn McGrattan, PhD, CCC-SLP, Assistant Professor, Department of Speech-Language-Hearing Science, University of Minnesota, Minneapolis, MN
Meghan Moore, PT, DPT, NCS, Physical Therapist, Johns Hopkins Children’s Center, Baltimore, MD
Jacqueline Montes, PT, EdD, Associate Professor of Rehabilitation and Regenerative Medicine, Columbia University Medical Center, New York, NY
Pamela Mosher, MD, Psychiatrist, University Health Network (UHN), Toronto, Ontario, Canada
Diane Murrell, LCSW, Social Worker, Texas Children's Hospital, Houston, TX
Julie Parsons, MD, Pediatric Neurologist, Children's Hospital Colorado, Aurora, CO
Vamshi Rao, MD, Attending Physician, Neurology, Lurie Children’s Hospital of Chicago; Assistant Professor of Pediatrics (Neurology and Epilepsy), Northwestern University Feinberg School of Medicine, Chicago, IL
Samuel R. Rosenfeld, MD, Orthopedic Surgeon, Children’s Health of Orange County Children's Hospital, Orange, CA
Marisa Schwab, MD, General Surgeon, University of California, San Francisco, CA
Brian Snyder, MD, PhD, Professor of Orthopaedic Surgery, Harvard Medical School; Research Professor of Bioengineering, Boston University, Boston, MA
Amy Xu, BS, Medical Student, Johns Hopkins University School of Medicine, Baltimore, MD
PLANNERS
Vanessa Battista, RN, MS, CPNP-PC, CHPPN, Palliative Care Pediatric Nurse Practitioner, Children's Hospital of Philadelphia, Philadelphia, PA
William Bell, BS Pharm, MBA, MSCC, RPh, Director of Clinical Client Services, Chalfont, PA
John Brandsema, MD, Pediatric Neuromuscular Neurologist, Children's Hospital of Philadelphia, associated with the Perelman School of Medicine at The University of Pennsylvania, Philadelphia, PA
Jin Yun Chen, MS, CGC, Genetic Counselor, Massachusetts General Hospital, Boston, MA
Thomas Crawford, MD, Pediatric Neurologist, Johns Hopkins Hospital, associated with Johns Hopkins University, Baltimore, MD
Bakri Elsheikh, MD, Neurologist, Neuromuscular Medicine, and Clinical Neurophysiology at The Ohio State University Wexner Medical Center, Columbus, OH
Al Freedman, PhD, Psychologist, Independent Practice, Philadelphia, PA
Melissa Gibbons, MS, CGC, Genetic Counselor at Children's Hospital Colorado, Aurora, CO
Jennifer Hubbell, BS, Occupational Therapist, Cincinnati Children's Hospital Medical Center, Cincinnati, OH
Becky Hurst-Davis, MS, RD, Pediatric Nutritionist, Intermountain Healthcare, Salt Lake City, UT
Chamindra Konersman, MD, Neurologist, Rady Children's Hospital, associated with the University of California, San Diego, San Diego, CA
Richard Kravitz, MD, Pediatric Pulmonologist and Sleep Medicine Physician, Duke University, Durham, NC
Kristin Krosschell, PT, DPT, Pediatric Physical Therapist, Northwestern University, Chicago, IL
Oren Kupfer, MD, Pediatric Pulmonologist, Children's Hospital Colorado, associated with the University of Colorado School Of Medicine, Denver, CO
Cathy Means, MS, Senior Outreach Specialist, University of Wisconsin School of Medicine and Public Health, Madison, WI
Diane Murrell, LCSW, Social Worker, Texas Children's Hospital, Houston, TX
Leslie Nelson, PT, PhD, OCS, Pediatric Neuromuscular Physical Therapist, Children’s Health, associated with the University of Texas Southwestern, Dallas, TX
Julie Parsons, MD, Pediatric Neurologist, Children's Hospital Colorado, Aurora, CO
Samuel R. Rosenfeld, MD, Orthopedic Surgeon, Children’s Health of Orange County Children's Hospital, Orange, CA
Peter Schochet, MD, Pediatric Pulmonologist, Children’s Health, associated with the University of Texas Southwestern, Dallas, TX
Mary Schroth, MD, Chief Medical Officer, Cure SMA, Elk Grove Village, IL
Edward Smith, MD Pediatric Neurologist, Duke University, Durham, NC
Anne Stratton, MD, Pediatric Physiatrist, Children's Hospital Colorado, associated with the University of Colorado, Denver, CO
Stacey Tarrant, RD, LDN, Nutritionist, Boston Children's Hospital, Boston, MA
Jane Taylor, MD, Pediatric Pulmonologist, UPMC Children's Hospital of Pittsburgh, associated with the University of Pittsburgh School of Medicine, Pittsburgh, PA
Laura Watne, MD, RD, Nutritionist, Children's Hospital Colorado, associated with the University of Colorado, Denver, CO
Elanda Williams, MA, Education Coordinator, Cure SMA, Elk Grove Village, IL
POLICY ON FACULTY AND SPONSOR DISCLOSURE
It is the policy of the University of Wisconsin–Madison Interprofessional Continuing Education Partnership (ICEP) to identify, mitigate and disclose all relevant financial relationships with ineligible companies* held by the speakers/presenters, authors, planners, and other persons who may influence content of this accredited continuing education (CE). In addition, speakers, presenters, and authors must disclose any planned discussion of unlabeled/unapproved uses of drugs or devices during their presentation. For this accredited continuing education activity all relevant financial relationships have been mitigated and detailed disclosures are listed below.
*Ineligible companies are those whose primary business is producing, marketing, selling, re-selling, or distributing healthcare products used by, or on, patients. The ACCME does not consider providers of clinical services directly to patients to be ineligible companies.
NAME |
ROLE(S) |
FINANCIAL RELATIONSHIPS DISCLOSURE | DISCUSSION OF UNLABELED/ UNAPPROVED USES OF DRUGS/DEVICES IN PRESENTATION? |
Kapil Arya, MBBS | Presenter | No relevant relationships with ineligible companies to disclose | No |
Mei Baker, MD | Presenter | No relevant relationships with ineligible companies to disclose | No |
Vanessa Battista, RN, MS | Planner, Presenter | AveXis; Biogen; Novartis; PTC Therapeutics, Inc. (All Contractor) | No |
William Bell, PharmD, MBA | Planner | No relevant relationships with ineligible companies to disclose | N/A |
Lisa Belter, MPH | Presenter | No relevant relationships with ineligible companies to disclose | No |
John Brandsema, MD | Planner, Presenter | Alexion Pharmaceuticals; Biogen; Catabasis; CSL Behring; FibroGen; Novartis; PTC Therapeutics, Inc.; Pfizer; Sarepta Therapeutics, Inc.; Summit, WaVe (All Grant); Audentes; Biogen Idec; Cytokinetics; Genentech; Momenta Pharmaceuticals, Inc.; Novartis Pharma; NS Pharma; PTC Therapeutics, Inc.; Sarepta Therapeutics, Inc.; Scholar Rock; WaVe (All Contractor) | No |
Karlla Brigatti, MS, CGC | Presenter | Biogen, Inc.; Novartis (Grant); Novartis (Contractor) | No |
Jin Yun Chen, MS, CGC | Planner | No relevant relationships with ineligible companies to disclose | N/A |
Thomas Crawford, MD | Planner, Presenter | Biogen, Inc.; Genentech USA, Inc.; Sarepta Therapeutics, Inc.; Scholar Rock (All Contractor) | No |
Arlene D’Silva, PhD | Presenter | No relevant relationships with ineligible companies to disclose | No |
Paul Drake, MD | Presenter | No relevant relationships with ineligible companies to disclose | No |
Bakri Elsheikh, MD | Planner, Presenter | Biogen (Contractor and Grant); Genentech (Contractor) | No |
Al Freedman, PhD | Planner, Presenter | Genentech; Novartis (Both Contractor) | No |
Melissa Gibbons, MS, CGS | Planner, Presenter | Biogen; Novartis (Both Grant) | No |
Jennifer Hubbell, BS | Planner | No relevant relationships with ineligible companies to disclose | No |
Becky Hurst-Davis, MS, RD | Planner | No relevant relationships with ineligible companies to disclose | N/A |
Brian Jackson, MD, MA | Presenter | No relevant relationships with ineligible companies to disclose | No |
Chamindra Konersman, MD | Planner | Biogen, Inc.; Novartis Pharma; Sarepta Therapeutics, Inc. (All Contractor) | N/A |
Richard Kravitz, MD | Planner | AveXis; Biogen, Inc.; Santhera (All Contractor) | N/A |
Kristin Krosschell, PT, DPT | Planner | ASPA Therapeutics; Biogen; Genentech; Novartis (All Contractor); Biogen (Grant) | N/A |
Oren Kupfer, MD | Planner, Content Reviewer | No relevant relationships with ineligible companies to disclose | N/A |
Cathy Means, MS | Planner | No relevant relationships with ineligible companies to disclose | N/A |
Jacqueline Montes, PT, EdD | Presenter | Biogen, Inc.; F. Hoffmann-LaRoche; Genentech USA, Inc.; Sarepta Therapeutics, Inc.; Scholar Rock (All Contractor) | No |
Meghan Moore, PT, DPT | Presenter | Biogen, Inc.; Genentech (Both Contractor) | No |
Pamela Mosher, MD | Presenter | No relevant relationships with ineligible companies to disclose | No |
Diane Murrell, LCSW | Planner, Presenter | No relevant relationships with ineligible companies to disclose | No |
Leslie Nelson, PT | Planner | Avexis; Biogen, Inc.; F. Hoffmann-La Roche; Genentech; Novartis; Scholar Rock (All Contractor) | N/A |
Julie Parsons, MD | Planner, Moderator | Biogen; Genentech; Novartis; Scholar Rock (All Contractor) | No |
Vamshi Rao, MD | Moderator | Avexis; Biogen; Capricor; Genentech; NSpharma; PTC Therapeutics, Inc.; RegenxBio; Sarepta Therapeutics, Inc.; Scholar Rock; Watermark (All Contractor) | No |
Samuel Rosenfeld, MD | Planner, Presenter | OrthoPediatrics Corp. (Contractor) | No |
Peter Schochet, MD | Planner, Content Reviewer | No relevant relationships with ineligible companies to disclose | N/A |
Mary Schroth, MD | Planner, Medical Director | Audentes Therapeutics (Contractor) | No |
Marisa Schwab, MD | Presenter | No relevant relationships with ineligible companies to disclose | No |
Edward Smith, MD | Planner | Biogen; Genentech; Novartis (All Contractor) | N/A |
Brian Snyder, MD, PhD | Presenter | Alcyone; OrthoPediatrics Corp. (Both Contractor) | No |
Anne Stratton, MD | Planner, Content Reviewer | No relevant relationships with ineligible companies to disclose | N/A |
Stacey Tarrant, RD, LDN | Planner | No relevant relationships with ineligible companies to disclose | N/A |
Jane Taylor, MD | Planner | No relevant relationships with ineligible companies to disclose | N/A |
Laura Watne, MD, RD | Planner | No relevant relationships with ineligible companies to disclose | N/A |
Elanda Williams, MA | Planner | No relevant relationships with ineligible companies to disclose | N/A |
Amy Xu, BS | Presenter | No relevant relationships with ineligible companies to disclose | No |
EDUCATIONAL GRANT ACKNOWLEDGEMENT INFORMATION FOR THE CLINICAL CARE SESSION ONLY
The University of Wisconsin–Madison Interprofessional Continuing Education Partnership (ICEP) and Cure SMA gratefully acknowledge the educational grants provided by Genentech and Novartis Gene Therapies.
Accreditation Statement
![]() | In support of improving patient care, this activity has been planned and implemented by the University of Wisconsin–Madison Interprofessional Continuing Education Partnership (ICEP) and Cure SMA. The University of Wisconsin–Madison ICEP 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. |
Credit Designation Statements | American Medical Association (AMA)The University of Wisconsin-Madison ICEP designates this live activity for a maximum of 5.5 AMA PRA Category 1 Credits™. Physicians should claim only the credit commensurate with the extent of their participation in the activity. |
![]() | American Board of PediatricsSuccessful completion of this CME activity, which includes participation in the evaluation component, enables the learner to earn up to 5.5 MOC points in the American Board of Pediatrics' (ABP) Maintenance of Certification (MOC) program. It is the CME activity provider's responsibility to submit learner completion information to ACCME for the purpose of granting ABP MOC credit. |
![]() | American Board of Internal MedicineSuccessful completion of this CME activity, which includes participation in the evaluation component, enables the participant to earn up to 5.5 Medical Knowledge MOC points in the American Board of Internal Medicine's (ABIM) Maintenance of Certification (MOC) program. Participants will earn MOC points equivalent to the amount of CME credits claimed for the activity. It is the CME activity provider's responsibility to submit participant completion information to ACCME for the purpose of granting ABIM MOC credit. |
American Academy of Physician Assistants (AAPA)The University of Wisconsin-Madison ICEP has been authorized by the American Academy of PAs (AAPA) to award AAPA Category 1 CME credit for activities planned in accordance with AAPA CME Criteria. This activity is designated for 5.5 AAPA Category 1 CME credits. PAs should only claim credit commensurate with the extent of their participation. | |
| American Nurses Credentialing Center (ANCC)The University of Wisconsin–Madison ICEP designates this live activity for a maximum of 5.5 ANCC contact hours. |
Accreditation Council for Pharmacy Education (ACPE)The University of Wisconsin–Madison ICEP designates this knowledge-based activity for a maximum of 5.5 hours/0.55 CEUs of CPE credit. Credit can be earned by documented attendance and by successfully completing the assessment. Credit will be provided to NABP CPE Monitor within 60 days after the activity completion. University Activity Number (UAN) JA0000358-9999-21-100-L01-P, 5.5 hours/0.55 CEUs | |
![]() | American Psychological Association (APA)(CE) credits for psychologists are provided through the co-sponsorship of the American Psychological Association (APA) Office of Continuing Education in Psychology (CEP). The APA CEP Office maintains responsibility for the content of the programs. |
ASWB Approved Continuing Education (ACE) Social Work CreditAs a Jointly Accredited Organization, the University of Wisconsin–Madison ICEP is approved to offer social work continuing education by the Association of Social Work Boards (ASWB) Approved Continuing Education (ACE) program. Organizations, not individual courses, are approved under this program. State and provincial regulatory boards have the final authority to determine whether an individual course may be accepted for continuing education credit. The University of Wisconsin–Madison ICEP maintains responsibility for this course. Social workers completing this course receive 5.5 live continuing education credits. | |
Wisconsin Physical Therapy Association (WPTA)This activity has been approved by the APTA Wisconsin for 5.00 credits (Approval Number 18257). | |
Wisconsin Occupational Therapy Association (WOTA)This activity has been approved by WOTA for 5 credits. | |
| Continuing Education Units (CEUs)The University of Wisconsin–Madison ICEP, as a member of the University Professional & Continuing Education Association (UPCEA), authorizes this program for .55 CEUs or 5.5 hours. |
Available Credit
- 5.50 AAPA Category 1 CME
- 5.50 MOC: ABIM Medical Knowledge Points (Part II)
- 5.50 MOC: ABP Lifelong Learning Points (Part II)
- 5.50 ACPE Contact Hours - Pharmacist
- 5.50 AMA PRA Category 1 Credit™
- 5.50 ANCC Contact Hours
- 5.50 APA CE Credits
- 5.00 Physical Therapy Contact Hours
- 5.50 University of Wisconsin–Madison Continuing Education Hours
- 5.50 Approved for AMA PRA Category 1 Credit™