MDA For Strength Independence & Life

2016 MDA Clinical Conference Program Information

Practice Gaps in Physician Knowledge, Competence or Patient Outcomes

With more than 40 diseases under the MDA umbrella — all of them rare — physicians and allied health professionals must keep abreast of evolving standards of care for muscular dystrophy, ALS and related life-threatening diseases. Clinicians caring for individuals living with neuromuscular disorders must have a sound working knowledge of the role of genetics in diagnosis and the potential implementation of therapies currently in development. Genetic testing and other diagnostic strategies for neuromuscular diseases are evolving rapidly; and advances in respiratory and rehabilitation care are changing the prognosis for those with neuromuscular disease. To ensure optimal care and quality of life, the knowledge base of medical professionals providing care to individuals affected by these conditions must continue to expand.

In addition, despite standards of care and clinical care guidelines being established for some neuromuscular diseases, there remains variability in care across the country and the emergence of new issues warrant attention in the clinic setting. One such issue is the need for education of health professionals providing medical care to young adults who are transitioning from pediatric to adult care (i.e., transitional care). Due to advances in medical management, individuals with pediatric neuromuscular disorders, such as Duchenne muscular dystrophy, spinal muscular atrophy and the congenital muscular dystrophies, are living longer and often well into adulthood, thus requiring a sound strategy for providing optimal care beginning from day of diagnosis and continuing throughout the life of the patient.

Needs Assessment
Evaluation feedback from MDA’s most recent Clinical Conference in March 2014, review of recently published clinical care guidelines for several neuromuscular diseases, and the opinions of experts (including some MDA Care Center physicians) were used to identify practice gaps that could be addressed through the 2016 MDA Clinical Conference. MDA also provided the opportunity for potential conference attendees to submit topic recommendations; these recommendations were shared with and reviewed by members of the Clinical Conference Planning Committee.

Five major areas were identified as education needs:
1. Genetic testing and muscle ultrasound as diagnostic tools for neuromuscular diseases
2. Best practices in caring for those with neuromuscular diseases
3. Respiratory care for neuromuscular diseases
4. Rehabilitation care in neuromuscular diseases
5. Drug development and clinical trials

Description of Activity
The overarching goals of this conference are:
1. Discussion of genetic testing options and considerations for neuromuscular diseases
2. Overview of best practices for care of children and adults beginning with day of diagnosis, including diagnostic strategies, respiratory care and rehabilitation medicine
3. Update on the status of emerging therapies for neuromuscular diseases

Conference Educational Objectives
Designed to increase knowledge, skills and core competencies in:
• Genetics and genetic testing in neuromuscular diseases
• Best practices for provision of care from day of diagnosis until end of life
• Multidisciplinary care as a model for the clinical setting
• Caring for and empowering teens and young adults with neuromuscular diseases as they transition to adulthood
• New therapies under development for neuromuscular diseases

Target Audience and Methodology
The target audience for this conference is MDA Care Center directors, primarily specialists in neurology and physical medicine and rehabilitation, along with cardiologists, pulmonologists and other physicians, registered nurses, advanced practice health care providers and allied health professionals who care for individuals with neuromuscular diseases. Educational methods will include didactic lecture Q&A sessions, panel discussions, case presentations and demonstrations.

Accreditation Statement
This activity has been planned and implemented in accordance with the accreditation requirements and policies of the Accreditation Council for Continuing Medical Education (ACCME) through the joint providership of the American Association of Neuromuscular & Electrodiagnostic Medicine (AANEM) and MDA. The AANEM is accredited by the ACCME to provide continuing medical education for physicians.

AMA PRA Category 1 Credit™ (Physicians)
The AANEM designates this live activity for a maximum of 20.5 AMA PRA Category 1 credits™. Physicians should claim only the credit commensurate with the extent of their participation in the activity. CMEs can be claimed by completing the credit request form at

Credit for Other Health Care Professionals
Other health care professionals who participate in this continuing education activity may submit notification of their attendance to their appropriate accrediting organizations or state boards for consideration of credit. The participant is responsible for determining whether this activity meets the requirements for acceptable continuing education.

Disclosure Statement
It is the policy of the AANEM to ensure balance, independence, objectivity and scientific rigor in all of its sponsored educational activities. All participating speakers, course directors and planning committee members are required to disclose to the program audience any financial relationships related to the subject matter of this program. Relationships of spouse/partner with proprietary entities producing health care goods or services are also disclosed. Disclosure information was reviewed in advance in order to manage and resolve any possible conflicts of interest. All conflicts of interest have been resolved in accordance with ACCME Standards for Commercial SupportSM. Specific disclosure information for each speaker, course director and planning committee member will be shared with the audience at the beginning of each speaker’s presentation. A written Disclosure Summary has been provided as an insert to this Conference program.

Americans with Disabilities Act
People with disabilities may request a reasonable accommodation, such as sign language interpreter, by contacting the Muscular Dystrophy Association at (520) 529-5301 or by email to Requests should be made as early as possible to allow time to arrange for accommodations.

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