Novo Nordisk launches HemaGo XChange Portal for hemophilia patients
Novo Nordisk announced the availability of HemaGo XChange, a web-based portal that allows people with hemophilia to connect their circle of care to their treatment and bleed information, promoting collaboration and discussion regarding the management of their bleeding disorder. HemaGo XChange enhances the offerings of Novo Nordisk’s HemaGo mobile application and website, which since 2012 has helped patients track their hemophilia treatment, bleeding episodes and life events.
Data entered by the patient into the HemaGo diary can be shared through the HemaGo XChange with the individual's hemophilia treatment network. In addition, through a partnership between Novo Nordisk and the American Thrombosis and Hemostasis Network (ATHN), patients may also choose to have these data entered into ATHN’s national database of bleeding disorder treatment information. This sharing option is initiated by the patient with a request to their Hemophilia Treatment Center (HTC). ATHN is a nonprofit organization that partners with over 135 ATHN-affiliated HTCs across the country on innovative projects that use ATHN’s secure data resources to help improve the lives of people affected by bleeding and blood clotting disorders.
“Hemophilia is a dynamic condition, impacting many areas of a person’s life,” said John Spera, vice president, Biopharmaceuticals Marketing, Novo Nordisk. “We developed HemaGo XChange to help drive progress in hemophilia management by turning static data into usable information for people with hemophilia, their care teams and even researchers. With timely information about the daily experiences of patients, including bleeds, healthcare providers can adjust their care to better fit patient lives.”
Hemophilia is a rare, genetic condition that affects about 20,000 people in the U.S. Because of potential complications associated with hemophilia and the need for ongoing treatment and management, collaboration and communication between the patient and care team are critical. HemaGo helps facilitate this communication by offering multiple channels for sharing information.
Patients using HemaGo can:
- Provide information to their healthcare team, including access to treatment and bleed data, in real time through the HemaGo XChange web portal
- Choose to email data directly from the app or website at any time
- Opt-in through their HTC to have their data integrated into ATHN’s national database of bleeding disorder treatment information. ATHN will use and share these data with HTCs to foster its mission of advancing knowledge and transforming care for the bleeding and clotting disorders community
Providers invited by patients to connect via the HemaGo XChange portal can:
- View details about treatments, bleeds and more for multiple patients
- Track when and how much factor is used, the type of infusion, vial and dosing amounts and information about any other medications
- View type, location, duration, frequency and status of bleeds
- View patient and caregiver life experiences, such as pain and health scores or how a bleeding disorder has affected work, school or other activities
- Download in-depth reports for all recorded information
Novo Nordisk does not have access to patient-specific information. The company's access is restricted to de-identified data in which the individual sources of the data cannot be identified, in accordance with Health Insurance Portability and Accountability Act of 1996 (HIPAA) Privacy and Security Rules.