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

Jonathan C. Goldsmith, M.D.
Vice President of Medical Affairs
Immune Deficiency Foundation 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

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 producers 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 producers and distributors, including: American Red Cross, Baxter Bioscience, Bayer Healthcare LLC, Cangene Corporation, Grifols USA Inc., Novo Nordisk Pharmaceuticals Inc., Octapharma USA Inc., Wyeth, and ZLB Behring. 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 First, anyone interested in participating registers with the Patient Notification System and provides general contact information, including their preferred method of notification. Participants have the option of being notified by email, telephone, or fax, whichever is most convenient for them. If a therapy is withdrawn or recalled, the company involved immediately contacts Stericycle, Inc. who then notifies the enrolled participant directly. Every effort will be made to notify participants within 24 hours. Those participants who choose to be notified by email, telephone, or fax, will also receive a letter by first-class mail to ensure receipt of the information. In addition, consumers can call a 24-hour, toll-free number (1-888-UPDATE-U) 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 plasma therapies used.

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