Services for the Iowa Neuromuscular and Related Disorders Program are provided through outreach clinics across the state by the Iowa Neuromuscular Multispecialty Clinic at the University of Iowa Stead Family Children’s Hospital.

The Neuromuscular and Related Disorders Program is authorized by Iowa Administrative Code 641 IAC 4.6, which states:

641—4.6(136A) Neuromuscular and other related genetic disease program (NMP). This program provides comprehensive services statewide for individuals and families with neuromuscular disorders through outreach clinics and statewide, active surveillance for selected neuromuscular disorders.

4.6(1) Provision of comprehensive services. The department shall contract with the department of pediatrics at the University of Iowa to provide neuromuscular health care, case management and education outreach services for individuals and families within Iowa. The contractor shall provide annual reports to the department as specified in the contract.

4.6(2) Clinical services. The services provided may include, but are not limited to: diagnostic evaluations, confirmatory testing, physical therapy, consultation by board-certified neurologists, genetic counseling, medical case management, supportive services and referral to appropriate agencies.

What are Neuromuscular Disorders?

Neuromuscular disorders:

  • Affect individuals of all socioeconomic backgrounds and ethnicity across Iowa.

  • Are chronic disorders, often with onset of symptoms in childhood.

  • Have symptoms (muscle weakness, breathing problems, heart failure, etc.) that progress throughout childhood and adult life.

  • Usually result in life-long physical disability, such as loss of walking or use of arms.

  • Many of these diseases result in a shortened lifespan.

  • Usually result from gene changes, which can be inherited or “run in families” or occur as a new genetic change.

  • Many neuromuscular symptoms and the person’s quality of life can be improved with medical monitoring, early intervention, and supportive care in the home and community.

  • Some diseases have specific treatments that can dramatically improve outcomes, including prolonging life.

There are many forms of neuromuscular disease, including:

  • Disorders of the muscle (myopathies)

  • Examples include congenital myopathy, myotonic disorders and muscular dystrophies.

  • Muscular dystrophy refers to a group of inherited disorders marked by progressive weakness and degeneration of muscle tissue.

  • Disorders of the nerve (neuropathies)

  • The types of neuropathies seen in this program are typically inherited or genetic disorders of the nerve or nerve sheath.

  • Other neuromuscular disorders, such as spinal muscular atrophy (SMA), myasthenia gravis and more.

Services Provided by the Iowa Neuromuscular and Related Disorders Program:  

  • Ensure access to comprehensive health care services throughout the state of Iowa for children, adults, and families with a wide variety of neuromuscular and related disorders

  • Address complex and difficult needs of one of Iowa’s most vulnerable populations

  • Conduct specialized and efficient diagnostic evaluations

  • Provide care coordination of neuromuscular healthcare concerns

  • Provide supportive patient and family services for psychosocial concerns

  • Provide physical therapy evaluation and recommendations

  • Provide services which promote optimal medical outcome and quality of life, as these disorders affect all aspects of life for the individuals and their families

  • Provide education and information about neuromuscular and related disorders to families, health care providers, educators, and other interested individuals

The Iowa Neuromuscular and Related Disorders Program is supported in part by funds appropriated by the State of Iowa.

Iowa Neuromuscular and Related Disorders Program Annual Report 

For more information or to schedule an appointment, visit: Neuromuscular and Related Disorders Multispecialty Clinic