2018 Parent Project Muscular Dystrophy (PPMD) Duchenne Clinician Conference
Duchenne Muscular Dystrophy (DMD) is the most common fatal genetic disorder diagnosed in childhood, which affects approximately 1 in every 3,500 live male births (about 20,000 new cases) each year, worldwide. Interprofessional healthcare teams (medical, nursing, and allied health) and researchers specializing in neuromuscular diseases are among those who interact most frequently with patients and families living with Duchenne. As a result, special attention must be paid to the continuing education needs of those healthcare professionals who attend to patients and families in rural environments; and to those who provide care for multilingual/multi-cultural populations and populations with lower socioeconomic status and fewer resources. Due to the rapidly evolving Duchenne care and research landscape, it is also important to continue to foster continuing education of those who practice and work in institutions with more extensive resources.
The 2018 Parent Project Muscular Dystrophy (PPMD) Duchenne Clinician Conference is designed for healthcare professionals and clinical researchers. Our conference;s continuing education focus centers around: 1) presenting best practices in care and treatment of patients with Duchenne; 2) providing updates on the most promising near and long term cutting-edge therapies; and 3) creating networks of interprofessional colleagues for continued support and work in the field, which is vital to advances in treatment and care of Duchenne, and contributes to the ‘hub and spoke’ model of care.
The 2018 Parent Project Muscular Dystrophy Duchenne Clinician Conference (Wednesday, January 24 - Friday, January 26, 2018) is scheduled to be held at Sanibel Harbour Marriott Resort & Spa, 17260 Harbour Pointe Dr, Fort Myers, FL 33908. For registration information and conference details, please contact Amanda Weiglein at firstname.lastname@example.org.
Physicians, advanced practice nurses (nurse practitioners, clinical nurse specialists), nurses, allied health professionals (genetic counselors, nutritionists, physical therapists, occupational therapists, social workers), psychologists, clinical researchers, and education and behavioral specialists who provide healthcare and/or services for pediatric and adult patients and families living with Duchenne muscular dystrophy.
Discuss updated CDC Care Guidelines for Duchenne and the components of comprehensive Duchenne care.
Review the genetics of Duchenne Muscular Dystrophy and explain he importance of genetic testing and adequate review of results in the care those potentially affected by Duchenne Muscular Dystrophy.
Discuss the importance of coordination of care within the neuromuscular team for optimized care of patients with Duchenne Muscular Dystrophy.
Identify the role of corticosteroids and components updated neuromuscular care.
Discuss updated research findings regarding corticosteroid use in patients with Duchenne Muscular Dystrophy.
Discuss components of a comprehensive pulmonary evaluation, as outlined in the DMD Care Considerations.
Review the surveillance and management of growth and pubertal delay related to the use of corticosteroids in Duchenne.
Utilize appropriate strategies to evaluate and maintain bone health in Duchenne.
Identify effective strategies outlined in the DMD Care Considerations to evaluate weight, swallowing, and to provide optimal care for patients with Duchenne Muscular Dystrophy.
Discuss components of comprehensive cardiac evaluation and medications to manage heart failure, as outlined in the DMD Care Considerations.
Identify psychosocial challenges present in Duchenne, along with potential tools and appropriate referral resources which may be helpful for addressing those challenges.
Recognize the importance of access to educational resources for the Duchenne Muscular patient population.
Discuss cultural/lingual diversity among the Duchenne Muscular Dystrophy patient population.
Present strategies specific strategies, resources, and tools to assist in overcoming cultura/language barriers when caring for patients and families living with Duchenne Muscular Dystrophy.
Assess ethnic and cultural differences which may present barriers to accessing comprehensive Duchenne care.
Discuss components of optimal dental and swallowing care and management in the patient with Duchenne Muscular Dystrophy.
Discuss the surveillance and appropriate referral of patients with Duchenne Muscular Dystrophy demonstrating growth or pubertal delays, and potential treatment options for these patients.
Discuss components of optimal nutrition recommendations for the Duchenne Muscular Dystrophy patient population, as outlined in the DMD Care Considerations.
Discuss national, regional, community resources available to both providers, patients, and families to assist with Duchenne-related issues.
Discuss importance of occupational therapy services in providing optimal care to the Duchenne Muscular Dystrophy patient population.
Review components of transitioning to adulthood for Duchenne patients, including implications for benefit eligibility and care providers within both pediatric and adult care settings.
Discuss the components of adult Duchenne care.
Discuss strategies to facilitate transitional care of adolescents and young adults with Duchenne Muscular Dystrophy as discussed in the Duchenne Muscular Dystrophy Care Considerations.
Discuss the elements of standardized comprehensive care for female carriers of Duchenne, as defined in the updated DMD Care Considerations.
Explain the role of palliative care providing optimal care and improving quality of life for patients with Duchenne Muscular Dystrophy.
Discuss potential emergency complications for patients living with Duchenne Muscular Dystrophy, and identify educational resources and strategies to provide to families in an event of emergency or hospitalization.
Review the current landscape of Duchenne clinical trials, approved therapies in Duchenne, and access pathways.
Discuss resources that may assist in eliminating barriers to care and clinical trial engagement.
Discuss current research regarding developments and novel therapies for the Duchenne Muscular Dystrophy patient population.
Kathi Kinnett, BA, BSN, MSN, CNP
Edward C. Smith, MD
Amanda Weiglein, BSN
Alison Ballard, RN, CPNP
Vanessa Battista, RN, MS, CPNP
Jill Castle, MEd
Mary K. Colvin, PhD, ABPP
Anne Connolly, MD
Linda Cripe, MD
Sara DiVall, MD
Lisa Eldeen, RN
Patricia Furlong, BSN
Angela Hamby, RN
Joseph Hendricksen, PhD
Kim Marben, DNP, MSN, RN, CPN
Ann Martin, MS, CGC
Davi Mazala, PhD
Michileen Oberst, LCSW
Rachel Schrader, MS, RN, CPNP-PC
Claudia Senesac, PT, PhD
Heather Simpson, MOT, OTR/L
Jane Taylor, MD, MsCR, FAAP
Emmanuelle Tiongson, MD
Christina Trout, MSN, RN
Elizabeth Vroom, DDS
Kent C. Williams, MD
- 14.50 AMA PRA Category 1 Credit(s)™
- 14.50 ANCC
- 14.50 Attendance
- 1.45 IACET CEU
- 14.50 JA Credit - AH