hereditary

Pompe disease (Glycogen storage disease type II)

About

Pompe disease is caused by mutations in the GAA gene that lead to a deficiency of acid alpha-glucosidase and accumulation of glycogen in lysosomes. The infant type is serious, and the late type is mainly manifested as progressive muscle weakness. Core dilemmas: ① If infants are not treated, they will die of cardiopulmonary failure within one year of age;② Enzyme replacement therapy requires lifelong intravenous infusion;③ERT has limited effect on skeletal muscles;④ Induction of immune tolerance is crucial for patients with high antibody titers.

Features & Symptoms

  • GAA gene mutation
  • Acid alpha-glucosidase deficiency
  • Infant type: myocardial hypertrophy, muscle weakness
  • Late onset: Respiratory muscle weakness

Treatment Options

TreatmentDescriptionStagePrice Range
Alglucosidase alfaRecombinant acid alpha-glucosidase, infused intravenously every 2 weeks, is the standard enzyme replacement treatment for Pompeii disease.FDA批准$300K - $600K/年
Avalglucosidase alfaA new generation of recombinant enzymes has higher M6P content and has a better effect on skeletal muscle.FDA批准$350K - $700K/年
immune tolerance inductionFor patients with high titers of antibodies, immune tolerance induction is needed in combination with immunosuppressants (rituximab + methotrexate).临床应用$100K - $250K/疗程

Prognosis

Infantile-onset ERT can survive into adulthood, and late-onset ERT can delay progression

Additional Notes

Notes: Neonatal Screening: It is recommended to conduct neonatal screening for Pompeii disease. Early ERT can significantly improve the prognosis of infants; Antibody monitoring: CRIM status and antibody titers need to be monitored regularly after ERT, and CRIM negative patients need immune tolerance induction; Cardiac monitoring: Infant patients need to monitor myocardial hypertrophy regularly by cardiac ultrasound and electrocardiogram; Respiratory management: Lung function needs to be monitored regularly, and non-invasive ventilation can be used when ventilation is insufficient at night; Exercise rehabilitation: Regular exercise rehabilitation can improve muscle strength and exercise function.; Exclusive service commitment: The platform will allocate a dedicated medical team to each patient to assist in dismantling and properly deploying the following precautions throughout the process. When cross-state and cross-border diagnosis and treatment projects or drugs are involved, the platform will make overall arrangements for the entire docking; for disabled and semi-disabled patient groups, the platform will provide rush-free alternative solutions (including remote consultation, door-to-door sampling, direct drug delivery in the cold chain, etc.), to ensure that patients can get the same high-quality diagnosis and treatment resources without having to travel in person.; Study phase: FDA approval. Outcome: Infantile-onset ERT can survive into adulthood, and late-onset ERT can delay progression.

Frequently Asked Questions

What is Pompe disease (Glycogen storage disease type II)?

Pompe disease is caused by mutations in the GAA gene that lead to a deficiency of acid alpha-glucosidase and accumulation of glycogen in lysosomes. The infant type is serious, and the late type is mainly manifested as progressive muscle weakness. Core dilemmas: ① If infants are not treated, they will die of cardiopulmonary failure within one year of age;② Enzyme replacement therapy requires lifelong intravenous infusion;③ERT has limited effect on skeletal muscles;④ Induction of immune tolerance is crucial for patients with high antibody titers.

What are the symptoms of Pompe disease (Glycogen storage disease type II)?

GAA gene mutation,Acid alpha-glucosidase deficiency,Infant type: myocardial hypertrophy, muscle weakness,Late onset: Respiratory muscle weakness

How is Pompe disease (Glycogen storage disease type II) treated?

Alglucosidase alfa: Recombinant acid alpha-glucosidase, infused intravenously every 2 weeks, is the standard enzyme replacement treatment for Pompeii disease.; Avalglucosidase alfa: A new generation of recombinant enzymes has higher M6P content and has a better effect on skeletal muscle.; immune tolerance induction: For patients with high titers of antibodies, immune tolerance induction is needed in combination with immunosuppressants (rituximab + methotrexate).

What is the prognosis for Pompe disease (Glycogen storage disease type II)?

Infantile-onset ERT can survive into adulthood, and late-onset ERT can delay progression