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Patient Journey

Phase 1: Interest Phase

This first phase lasts around 6 months. It begins with your interest in gene therapy. After that, it is important to determine whether you meet the inclusion criteria.

You would either be registered by your healthcare provider (HCP) or have registered yourself. You should have received a welcome email or SMS by now. If you’re reading this, it means you’ve already completed these initial steps.
At this stage, you are convinced that gene therapy is the right option for you, and the next phase can begin.

Phase 2: Assessment Phase

This second phase is shorter, lasting about 4 months. Once you give your consent for testing, you will be scheduled for tests at the hospital. Either you or your HCP will document the types of tests and the dates when they are completed.

Next, you will undergo eligibility testing, and you or your HCP will need to complete the results of the eligibility assessment. Once you are declared eligible, you can make your decision about proceeding with gene therapy.
If you decide to go ahead, your HCP will schedule the date for your injection. You, or your HCP, will then confirm the date of your infusion.

Phase 3: Peri- and Post-Infusion Phase

This phase lasts between 3 and 6 months. The big day has arrived—today is the day of your injection. You would have received reminders beforehand to ensure you don’t miss it!
After your injection, you will need to have weekly blood tests to monitor your progress. Additionally, you will have access to digital follow-ups and receive informational modules to guide you through this period.

Phase 4: Long-Term Monitoring

This final phase will last several years. It is designed to support your long-term digital follow-up and help you adapt to any necessary lifestyle changes. You will also need to have an annual blood test to track your progress and ensure that your health stays on course.

Updated on October 14, 2024

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