Understanding Health Insurance Literacy and Challenges in Accessing Health Services in Niemann-Pick Disease Through the Eyes of Patients and Families

Niemann-Pick is a group of autosomal recessive disorders characterized by lipid accumulation within cells, splenomegaly and variable neurological deficits. There are various types classified on the basis of genetic causes as well as signs and symptoms of the condition. These include;
  • Niemann-Pick type A or infantile neurovisceral ASMD
  • Type A/B or chronic neurovisceral ADMS
  • Type B or chronic visceral ADMD
  • Type C visceral-neurodegenerative or early-infantile
  • Type C neurodegenerative late-infantile
  • Type C Neurodegenerative juvenile
  • Type C psychiatric neurodegenerative or adult.
  • The study is designed to document the health insurance literacy as well as the patient experience in Niemann-Pick as it relates to accessing desired care, services and medications for patients. The outcome of this research will be used to inform various other workstreams as NNPDF works to assist families.   If you are interested in learning more about the study or participating in the study, click here or visit www.clinicaltrials.gov, using the identifier