Thank you for visiting a site hosted by CSL Behring.
Your privacy is very important to us and we are committed to maintaining your
we may collect while you visit our Web site and how we use that information.
When you voluntarily provide us with personal information, such as your name,
address or an e-mail address, we treat this information with strict confidentiality.
No personal information is ever rented, sold, publicly posted or shared with other companies,
to your use of this Web site. You may, however, be subject to additional terms that may apply when you access
particular services or materials on certain areas in this Web site, or by following a link from this Web site
The majority of this site is offered without collecting any personally identifiable information from our visitors.
We collect personally identifiable information, such as name, address and e-mail, and non-personally identifiable
demographic information (age, gender, etc.), only when you voluntarily submit it to us or you request information
from us. We also collect non-personally identifiable aggregate information to learn more about areas of the site that
are of the most interest to visitors, or to learn who visits the site. We may on occasion post non-personally identified
messages we receive from visitors to our sites, such as comments about our products and company.
CSL Behring by e-mail. If you want to keep such content or business information, ideas, concepts, or inventions
private or proprietary, do not send them in an e-mail to CSL Behring.
Only when you specifically request it will the information that we collect be used to respond to your questions,
or to fulfill e-mail messaging programs, and notify visitors about new content or services on our Web sites.
You will have the ability to opt-out from receiving marketing communications from CSL Entities at any time.
If you wish to unsubscribe from any CSL marketing materials, you can manage your preferences via
https://cslbehringpreferences.com/ or write to us at CSL Behring c/o Patient Services P.O. Box 1587
Jeffersonville, IN 47130 or by calling 833-436-0021 to tell us that you no longer wish to receive postal mail
and/or e-mail. Please provide us with your exact name, postal address, and/or e-mail address. We will be sure
your name is removed from our mailing list.
As many other companies do, we measure the performance of our Web site to improve and customize it to better serve
your needs. During your visit, we automatically collect the following information about your computer and your visit:
The domain and host from which you access the Internet
The Internet address of the Web site from which you linked directly to our site, if applicable
Your site activity:
The date and time you arrived at our site
How long you spent on the site
Which pages you visited
The date and time you left our site
Which page/site you accessed from our site
Your Internet protocol (IP) address and
Your computer's operating system and browser software
We may use third parties to manage these performance measurements.
However, we do not acquire information on the individual identity of any visitor.
These third parties will be required to follow our privacy standards,
to provide us only with aggregate information, to use the information collected
only for the purposes for which the third party was retained by us, and to then destroy the information.
You may have the option to register to our site. If you do, we may retrieve your name,
address, telephone number and e-mail address. Nothing will happen if you choose not to
submit this information except that you may not obtain the functionality or receive information you requested.
At any time upon your request, we will delete or modify personal information that
you provided earlier. If you want to review, update or delete your personal data,
please sign in to make the desired changes. We will use personal information only
for the purpose indicated to you when you provided it. We will not disclose, sell,
rent or exchange this information to any other organization or entity unless you
are first notified and expressly agree to it, or as otherwise required by law.
In addition to the uses and disclosures set forth above, we may also release personal
information to third parties to comply with applicable legal requirements, such as in
responding to a search warrant, subpoena, or court order, or complying with a statute,
regulation, or other law; in special situations, such as in response to a physical threat
to you or to others, or to protect our property or to otherwise defend or assert our legal
rights; or in ways that we believe are consistent with government regulations, guidance,
directions, and laws applicable to CSL Behring. In addition, we may cooperate with law
enforcement authorities in investigating and prosecuting Web site visitors who violate our
rules or engage in behavior that is harmful to other visitors or is illegal. Finally, in
conjunction with a corporate sale, merger, dissolution, or acquisition, we may transfer
your personal information to a third party in connection with that transaction.
Protection of Children's Information
CSL Behring recognizes the privacy concerns of parents and the importance of protecting
the privacy of information collected from children. This Web site is operated primarily
for the use of healthcare providers, adult consumers and caregivers, and is not designed
or intended to attract children under the age of 13.
From time to time, we may offer an online program or activity that allows children
under the age of 13 to participate. In such instances, we provide additional privacy protections.
Additional Children's Privacy Protections
Parents of children who participate in online activities that are open to children under
13 through this Web site can be confident that any personal information that is provided
to this Web site will be collected and maintained in accordance with the Children's Online
Privacy Protection Act (“COPPA”). We encourage parents to supervise their children's activities
online and to participate with their children's online activities whenever possible. If you have
questions or concerns about the Internet and privacy for children, we encourage you to visit
At the present time, CSL Behring is not conducting any activities that are subject to the requirements of COPPA.
Maintaining security of personally identifiable information has our highest priority.
We follow strict security procedures for safeguarding information and preventing unauthorized access.
We protect information in our high-security data center and adhere to strict computer security standards.
We have put in place privacy protection control systems designed to ensure that information about you remains
safe and secure. Only authorized CSL Behring employees are permitted to have access to this information and such access is limited by need.
However, the transmission of information over the Internet always presents some risk. For example,
an unauthorized third party may intercept a transmission, or could find a means to penetrate our
security measures. Consequently, although we believe we have implemented appropriate measures to
protect your personal information, we cannot guarantee that your information will never be disclosed
in deciding what information you send to us via e-mail or submit to us via this site.
Cookies are unique to your computer, and allow the Web server to recall information that will
make your use of the site easier and more convenient. Cookies add convenience that allows you
to save time when you return to this site. They can only be read by a Web server in the domain
that issued the cookie to you. Cookies cannot be used to run programs or deliver viruses to your computer.
from online visitors. Cookies track the type of browser, operating system, and Internet service
provider and allow us to tabulate the total number of visitors to our site.
You may disable the cookie feature on your computer or set it to alert you when cookies are
being sent by using the preferences on your browser. If you choose to disable cookies, however,
we may not be able to provide you with certain features (e.g., customized delivery of information)
available on our Web site. Further information about cookies can be found here. Further information
about Google Analytics can be found here, and you may opt-out of Google Analytics here.
time without prior notification. Your use of this Web site constitutes your agreement to this right.
materially changes its practices regarding collection or use of your personal information, your personal
information will continue to be governed by the Policy under which it was collected unless you have been
provided notice of, and have not objected to, the change.
Generally, online social media resources are interactive tools that enable you to collaborate and
share information with others. Social media resources include but are not limited to social networks,
discussion boards, bulletin boards, blogs, wikis, and referral functions to share web site content and
tools with a friend or colleague. CSL Behring may collect personal information from you to enable you
to use online social media resources we may occasionally offer to you. CSL Behring may also enable you
to use these social media resources to post or share personal information with others. When using social
media resources carefully consider what information about yourself you choose to share with others.
In addition to the uses described above for the CSL Behring websites, some CSL Behring Web sites
and online resources are specifically designed to be compatible and used on mobile computing devices.
Mobile versions of CSL Behring Web sites may require that you log in with a user account for that Web site.
Information about your use of the mobile version of the Web site will be associated with your user account.
Further, some of our Web sites and online resources may enable you to download an application, widget or
other tool that you can use on your mobile or other computing device. Some of these tools may store
information on your mobile or other device. These tools may transmit personal information to CSL Behring
to enable you to access your user account and to enable CSL Behring to track use of these tools. Some of
these tools may enable you to e-mail reports and other information from the tool. CSL Behring may use
personal or non-identifiable information transmitted to CSL Behring to enhance these tools, to develop
new tools, for quality improvement and as otherwise described in this Policy or in other notices CSL Behring provides.
Use of Third Parties to Provide Services
We contract with third parties to provide services related to managing this Web site.
In such cases, these third parties may have access to personal information. These third
parties are required to follow our privacy standards and to use such personal information
only in order to fulfill their responsibilities to us.
In the regular course of business, CSL Behring acquires personal information by interactions with customers,
healthcare professionals, employees, and others. CSL Behring is committed to safeguarding the privacy of the
personal information that we gather and recognizes and respects the privacy rights of individuals. For more
HEMGENIX®, etranacogene dezaparvovec-drlb, is a one-time gene therapy for the treatment of adults with hemophilia B who:
Currently use Factor IX prophylaxis therapy, or
Have current or historical life-threatening bleeding, or
Have repeated, serious spontaneous bleeding episodes.
HEMGENIX is administered as a single intravenous infusion and can be administered only once.
What medical testing can I expect to be given before and after administration of HEMGENIX?
To determine your eligibility to receive HEMGENIX, you will be tested for Factor IX inhibitors. If this test result is positive, a retest will be performed 2 weeks later. If both tests are positive for Factor IX inhibitors, your doctor will not administer HEMGENIX to you. If, after administration of HEMGENIX, increased Factor IX activity is not achieved, or bleeding is not controlled, a post-dose test for Factor IX inhibitors will be performed.
HEMGENIX may lead to elevations of liver enzymes in the blood; therefore, ultrasound and other testing will be performed to check on liver health before HEMGENIX can be administered. Following administration of HEMGENIX, your doctor will monitor your liver enzyme levels weekly for at least 3 months. If you have preexisting risk factors for liver cancer, regular liver health testing will continue for 5 years post-administration. Treatment for elevated liver enzymes could include corticosteroids.
What were the most common side effects of HEMGENIX in clinical trials?
In clinical trials for HEMGENIX, the most common side effects reported in more than 5% of patients were liver enzyme elevations, headache, elevated levels of a certain blood enzyme, flu-like symptoms, infusion-related reactions, fatigue, nausea, and feeling unwell. These are not the only side effects possible. Tell your healthcare provider about any side effect you may experience.
What should I watch for during infusion with HEMGENIX?
Your doctor will monitor you for infusion-related reactions during administration of HEMGENIX, as well as for at least 3 hours after the infusion is complete. Symptoms may include chest tightness, headaches, abdominal pain, lightheadedness, flu-like symptoms, shivering, flushing, rash, and elevated blood pressure. If an infusion-related reaction occurs, the doctor may slow or stop the HEMGENIX infusion, resuming at a lower infusion rate once symptoms resolve.
What should I avoid after receiving HEMGENIX?
Small amounts of HEMGENIX may be present in your blood, semen, and other excreted/secreted materials, and it is not known how long this continues. You should not donate blood, organs, tissues, or cells for transplantation after receiving HEMGENIX.