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

Miriam O'Day
Senior Director Public Policy
Alpha-1 Foundation

photo of mother and child

patient notification logo

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 consumer groups 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 Consumers

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 consumers and health care providers

Cooperative Effort Between Industry and Consumers

Key consumer groups, including Alpha-1 Association, Alpha-1 Foundation, Canadian Blood Services, Committee of Ten Thousand, Hemophilia Federation of America, Immune Deficiency Foundation, and National Hemophilia Foundation, worked closely with the plasma protein therapeutics industry in designing the Patient Notification System. The system is administered by PPTA and is supported and funded by all major plasma-derived and recombinant analog therapy manufacturers and distributors, including: Baxter Bioscience, Bayer Healthcare LLC, Biotest Pharmaceuticals Corporation, Cangene Corporation, CSL Behring, Grifols USA Inc., Novo Nordisk, Octapharma USA Inc., Octapharma Canada Inc., Pfizer Inc. and Talecris Biotherapeutics. An advisory panel made up of consumer groups 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 If a therapy is withdrawn or recalled, the company involved immediately contacts Stericycle, Inc. which then directly notifies the registrant.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 www.PatientNotificationSystem.org 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.

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