What is the SCN International Registry?

The SCN International Registry is a disease registry which was established in Australia, Canada, the European Community and the United States and initiated in March 1994. This Registry is directed by a scientific advisory board of physicians from around the world who care for SCN patients. The mission of the Registry is to establish a worldwide database of treatment and disease-related outcomes for persons diagnosed with SCN. Collection of this information will lead to improved medical care and become a focus for future research.

Why was the Registry created?

  • To establish a worldwide database of treatment and disease-related outcomes for persons diagnosed with SCN.
  • To monitor the long-term safety of treatments in SCN patients.
  • To use information gained through the Registry to improve the medical care of SCN patients.

Who is eligible to participate?

All individuals three months of age or older who have a physician’s diagnosis of SCN are eligible to enroll in the SCN International Registry.

A diagnosis of SCN must be documented by:

  1. Clinical history of absolute neutrophil counts <500/mm3 over a three month period
  2. A bone marrow evaluation consistent with SCN
  3. Cytogenetic evaluation and
  4. History of infections

Non-eligible patients include those with:

  • Drug-induced neutropenia
  • Thrombocytopenia (platelet count less than 50,000/mm3 ) or anemia (hemoglobin less than 8 gm/dl)
  • Myelodysplastic syndrome, aplastic anemia, known HIV infection, or other hematologic diseases
  • Known immune diseases such as rheumatoid arthritis and systemic lupus, and autoimmune neutropenia
  • Chemotherapy-induced neutropenia

What are the treatment options?

The registry will operate under a protocol which describes standard of care therapy as determined by the Scientific Advisory Board. The Registry will not dictate or limit the treatment options considered by physicians and their patients.

Amgen Inc. Has agreed to donate NEUPOGEN (Filgrastim) to the Registry. Distribution will be arranged free of charge to enrolled patients in the United States, Canada and Australia who require treatment and maintain a current and active status in the Registry. (There is currently no time limit to this agreement; however, it will be re-evaluated periodically by Amgen Inc.)

SCN patients on other physician-prescribed treatments or observation and supportive care are also encouraged to enroll.

How is data collected and handled?

Upon enrollment, patients and their physicians voluntarily agree to provide information about patient health and course of treatment. Physicians will be asked to complete semi-annual summaries of patient clinical experiences. Patients will also be asked to complete questionnaire on their health status.

Patient data will become part of a confidential, worldwide date bank.

What is the benefit of the Registry to a participating physician?

  • Will become part of a physician network designed to increase the understanding of SCN
  • May request information from the registry
  • Is eligible to submit research proposals to the advisory board for evaluation
  • Will receive periodic summaries and analyses of aggregated data from the Registry as an aid to clinical management and research

How can I learn more about the Registry?

You can call 800-SCN-4INFO to inquire about the SCN Registry.