Patient Notification System

 Patients Are Notified of Therapy Withdrawals Via Free, Confidential Communications Network

The Plasma Protein Therapeutics Association (PPTA) members have developed a first-of-its-kind Patient Notification System (PNS) as a rapid communications mechanism to reach patients in North America who are using plasma protein therapies and who have registered with PNS.

The PNS is a free, confidential, 24-hour communication system that provides information on plasma-derived and recombinant (made from DNA) product withdrawals and recalls in North America. The system was created to provide consumers with a single, convenient and confidential source for up-to-date information about the plasma protein therapies they use and depend on. Led by PPTA, the Patient Notification System was developed by manufacturers of plasma protein therapeutics with direct input from consumers.

Ensuring Confidentiality

Maintaining patient confidentiality was one of the primary considerations in developing the system. An advisory panel comprising representatives from patient groups helped design the system to safeguard sensitive registrant information. To ensure confidentiality, the Patient Notification System is operated by the Stericycle, Inc., an independent organization that specializes in pharmaceutical notifications. All registrant information is kept strictly confidential.

Free to Consumers

There is no fee to participate in the Patient Notification System. The system is funded by the manufacturers of plasma protein therapies and is free to consumers and health care providers.

Cooperative Effort Between Industry and Patient Groups

Key patient 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 manufactures and distributers, including American Red Cross, CSL Behring, Baxter Bioscience, Bayer Healthcare LLC, Cangene Corporation, Grifols USA, NovoNordisk Pharmaceuticals, Octopharma USA, Talecris Biotherapeutics, and Wyeth Pharmaceuticals. An advisory panel comprising patient groups and industry representatives provides input on the system and makes additional recommendations for future enhancements.

Patient Notification System in Action

Interested patients should register with the Patient Notification System, which asks for general contact information, including preferred method of notification. Registrants have the option of being notified by email, telephone, or fax. Email is the preferred method of notification because it is instantaneous, trackable and accessible, even if a registrant is travelling.

If a therapy is withdrawn or recalled, the company involved immediately contacts Stericycle, Inc., which then notifies the registrant. Every effort is made to notify registrants within 24 hours. Each registrant also will receive a letter by first-class mail to ensure that they've received the information. In addition, patients and consumers can go online to www.patientnotificationsystem.org or call a 24-hour, toll-free number (1-888-UPDATE-U) for current information on product 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 and manufacturer for all therapies they use.

Register

Participants can register on line at: www.patientnotificationsystem.org or by calling 1-888-UPDATE-U.