Discharge Instruction Following Onasemnogene Abeparvovec ( Zolgensma) Infusion Treatment

This leaflet will provide you with some instructions following Zolgensma infusion treatment.

What is Zolgensma?

Zolgensma is a gene therapy medicine used to treat spinal muscular atrophy, a serious condition of the nerves that causes muscle wasting and weakness.Zolgensma contains the active substance “onasemnogene abeparvove”

What will happen before Zolgensma infusion?

In the first visit, your child’s condition will be assessed by clinical examination as well as some laboratory tests before the infusion treatment .

What will happen after Zolgensma infusion?

Further laboratory tests will be needed after the infusion treatment. Additionally , your child’s doctor will discuss with you after treatment care plan

Medicince  instructions:

• Your child will receive an oral corticosteroid one day before the infusion treatemt to reduce the Zolgensma side effects.
• Your child will need to continue taking the corticosteroid for a minimum of 12 weeks (as determined by your child’s doctor based on the result of the blood tests)
• Refer to the following table for more details

You will be provided with a separate detailed Corticosteroid (Prednisolone) tapering sheet for future dose adjustment

Discharge instructions:

• Corticosteroids are important medication after Zolgensma infusion treatment, therefore you should:
  • Contact your doctor immediately if a dose of the corticosteroid is missed or vomited up
  • Make a record of when did you give your child their medicine so you can share details with your doctor of when the last dose was given or vomited up
• The side effects that occurred in patients treated with Zolgensma are:
  • Elevated liver enzymes
  • Drop-in platelet count
  • Raised cardiac (heart)enzymes.
• Your doctor will request regular blood tests to monitor your child’s liver function, blood count and the cardiac enzyme (Troponin I) ;once every week in the first month and every 2 weeks in the second and third month
• For international patients, please ask your primary local physician about your blood tests schedule.
• Infections before or after Zolgensma infusion can lead to more serious complications. Contact your doctor immediately if you see any signs of a possible infection such as coughing, wheezing, sneezing, runny nose, sore throat, fever, unexpected bruising/ bleeding, seizures, or decreased urine output
• Vaccinations schedule will be adjusted based on your child’s corticosteroid course. Please follow up with your primary physician

Personal Hygiene Care

• Perform good hand hygiene all the time. Wash your hand frequently with soap and water
• Wear gloves when changing the diaper for the first 4-6 weeks after Zolgensma infusion treatment. Place the diaper in separate bag before placing it in general waste bin
• Avoid contact with sick people or immunocompromised people 4-6 weeks after Zolgensma infusion treatment
• Clean your child’s surrounding such as bed edges, chair. etc. once a day with bleach solution 4-6 weeks after the infusion treatment. Do not clean the patient with this solution. Keep the bleach solution out of reach of children
• You can prepare bleach solution at your home by adding 10 ml household bleach to 90 ml water. The compounded product will expire 7 days after preparation