|About the Patient Notification System
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
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
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therapy is withdrawn or recalled, the company involved immediately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.