Observational Study of Patients with Hemophilia B Treated with HEMGENIX® (etranacogene dezaparvovec)

IX-TEND™ 4001 is an observational research study to collect information on the long-term effectiveness and safety of HEMGENIX® (etranacogene dezaparvovec) in people living with hemophilia B, and how it compares with FIX continuous prophylaxis in a real-world setting.

About 500 people living with hemophilia B will take part in this study (250 who have taken or plan to take, HEMGENIX® and 250 using FIX continuous routine prophylaxis) at about 75 locations in about 15 countries.

This is an observational study, which means you will continue to receive care as already decided by you and your healthcare provider(s) – independent of this study. This study will collect data on your health and any outcomes of treatment, but your treatment itself will not change in any way as a result of your participation in this study.

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There are no required visits or treatments for this study. All Treatment decisions are independent of decision to participate in the study. You will receive treatment at your regular visits with your doctor.

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Am I eligible to participate?
You may be able to participate if:

  • You are willing to sign a consent form to participate in this observational study.
  • You are prescribed treatment with commercial HEMGENIX® in the next 3 months OR
  • You received HEMGENIX® within the last 6 months
By registering on the IX-TEND™ 4001 portal and accepting this terms, you agree that your personal data (including but not limited to your email address – please refer to the Privacy Notice to see the complete data) will be collected and processed by CSL (as the data controller) and UBC (as the data processor). You agree to the collection, use, storage, and transfer of your personal data, including in countries other than your own that may not have the same level of protection as your own, by UBC for program purposes only. You further agree to UBC processing, using, storing, and transferring your personal data electronically to third parties (situated throughout the world, including to countries other than your own that may not have the same level of data protection as your own country) in connection with the program. For the avoidance of doubt, you have the right to access, update, correct or request deletion of your personal data at any time. In order to exercise this right, such a request should be addressed to UBC privacy@ubc.com, with address at 920 Harvest Drive, Suite 200, Blue Bell, PA 19422, USA and who will collect and store your personal data within our data centers in the US and EU.
IX-TEND™ 4001 Study
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