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About the Patient Notification System
Ensuring Confidentiality
Maintaining registrant confidentiality was one of the primary considerations in developing the system. An advisory panel made up of representatives from patient groups, the FDA, and manufacturers helped design the system to safeguard sensitive registrant information. To ensure confidentiality, the Patient Notification System is operated by Stericycle, Inc., an independent organization that specializes in pharmaceutical notifications.

All registrant information will be held in strict confidence by Stericycle, Inc.

Free to Registrants
There is no fee to participate in the Patient Notification System. The system is funded by the manufacturers of plasma-derived and recombinant analog therapies and is free to all registrants.

Cooperative Effort Between Industry and Stakeholders
    Founding Partners:
  • Alpha-1 Foundation
  • Committee of Ten Thousand
  • Hemophilia Federation of America
  • Immune Deficiency Foundation
  • National Hemophilia Foundation
These stakeholders worked closely with the plasma protein therapeutics industry in designing the Patient Notification System in 1998.

The system is administered by PPTA and is supported and funded by all major plasma-derived and recombinant analog therapy manufacturers.

  • Aptevo
  • Baxalta US Inc. (now Shire)
  • Bayer Healthcare LLC
  • Biogen Inc. (now Bioverativ U.S., LLC)
  • Biotest Pharmaceuticals Corporation
  • Bioverativ U.S., LLC
  • Cangene Corporation dba Emergent BioSolutions (now Aptevo)
  • CSL Behring
  • CSL Behring Canada
  • Grifols USA Inc.
  • Kedrion Biopharmaceuticals
  • Novo Nordisk
  • Octapharma USA Inc.
  • Octapharma Canada Inc.
  • Pfizer Inc.
  • Shire

An advisory panel made up of patient groups, the FDA, and industry representatives provides input on the system and makes additional recommendations for future enhancements.

How the System Works
Anyone interested in participating registers with the Patient Notification System and provides general contact information, including their preferred method of notification. Registrants have the opportunity of being notified by email, telephone, or fax, whichever is most convenient for them. Please consider email as your method of notification for the following reasons: instantaneous, trackable, accessable, even on travel.

If a therapy is withdrawn or recalled, the company involved immediately contacts Stericycle, Inc. which then directly notifies the registrant. Every effort will be made to notify registrants within 24 hours. Each registrant will also receive a letter by first-class mail to ensure receipt of the information.

In addition, consumers can go online to or call a 24-hour, toll-free number 1-888-UPDATE-U (1-888-873-2838) for current information on therapy recalls or withdrawals. To maximize the usefulness of the system, it is important for consumers to keep accurate infusion logs and record the lot number, therapy name, and manufacturer for all therapies used.

"The Patient Notification System is a model for cooperation and communication between industry and consumers."

Kimberly Haugstad, MBA
Executive Director
Hemophilia Federation of America

"Since 1998, the Patient Notification System has given plasma product users, like Alpha -1 Antitrypsin Deficiency patients, confidence in the therapies they infuse. As one of founding organizations of the system, we see it as a model for cooperation and communications between patients and industry with shared goal of providing patients with information necessary to manage their infusions."

Henry R Moehring, MBA
President & CEO
Alpha-1 Foundation

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