Discussions on Rare Hematological Disorder to be Held at University of Washington, Seattle
The Severe Chronic Neutropenia International Registry (SCNIR), in conjunction with the National Neutropenia Network (NNN), will host a three-day seminar to educate patients, families and medical professionals on the rare hematological disorder, severe chronic neutropenia (SCN).
Seattle, WA (PRWEB) July 21, 2006
The Severe Chronic Neutropenia International Registry (SCNIR), in conjunction with the National Neutropenia Network (NNN), will host a three-day seminar to educate patients, families and medical professionals on the rare hematological disorder, severe chronic neutropenia (SCN).
The seminar, which will be held Aug. 11-13 at the University of Washington South Campus Center, will feature discussions led by leading researchers on this rare condition. The meeting will focus on current treatment options, infection prevention, and other concerns encircling the life threatening disease.
Sessions will feature the latest medical updates concerning neutropenia presented by long-term researcher Dr. David C. Dale, co-chair of the SCNIR; Dr. Laurence A. Boxer, SCNIR board member and expert on neutropenia; Audrey Anna Bolyard, RN, BS, SCNIR clinical manager, and more.
Severe congenital neutropenia, or Kostmann’s Syndrome, proliferated international headlines in May when Boxer, Dale and Bolyard released a research article in the May 2006 issue of the Journal of Pediatrics. The study investigates the cases of five children, from four different families, all of whom were conceived by in-vitro fertilization by donor insemination, and all suffer from congenital neutropenia.¹
Other topics to be covered at the meeting will include a G-CSF/filgrastim dosing session, a dental care overview, special risks related to depression in chronically ill patients, and tips on infection prevention in the healthcare environment. Special break out sessions also will be held for each subtype of neutropenia: congenital, cyclic and idiopathic/autoimmune.
Hematologists are welcome and encouraged to attend.
*Please note: neutropenia, as mentioned in this press release, is NOT the form of neutropenia caused by chemotherapy drugs.
About Neutropenia:
Neutropenia encompasses a group of rare hematologic disorders in which the patient's absolute neutrophil count (ANC) falls below 500 cells per cubic millimeter. In most cases, SCN is due to underproduction of neutrophils in the bone marrow. The three forms of SCN are congenital neutropenia, cyclic neutropenia and idiopathic neutropenia. The idiopathic group encompasses the autoimmune form (most commonly found in infants and young children) in which an individual develops an antibody that attacks and kills the circulating neutrophils. Most forms of neutropenia are life-long and all forms leave the patient severely immunocompromised. The congenital form of neutropenia has recently been suggested to be a pre-leukemic condition for some patients.²
About the Severe Chronic Neutropenia International Registry:
The Severe Chronic Neutropenia International Registry (SCNIR) was established in March 1994, in the United States, Australia, Canada, and the European Community. The SCNIR is directed by a scientific advisory board of physicians from around the world who care for SCN patients. The SCNIR mission is to establish a world-wide database of treatment and disease-related outcomes for persons diagnosed with SCN. Collection of this information will lead to improved medical care and is used for research to determine the causes of neutropenia.
Http://depts. washington. edu/registry (http://depts. washington. edu/registry)
(800) 726-4463
About the National Neutropenia Network:
The National Neutropenia Network (NNN) is a volunteer driven 501(c)3 nonprofit organization was established in 1994 to promote awareness, education, research and support for people with neutropenia and their families through a national resource network.
Www. neutropenianet. org
(810) 229-5797
References:
1.) Boxer, LA, et. Al. “Strong evidence for autosomal dominant inheritance of severe congenital neutropenia associated with ELA2 Mutations.” Journal of Pediatrics. Volume 148, Issue 5, 633-636 May 2006.
2.) Rosenberg, PS, et. Al. “The incidence of leukemia and mortality from sepsis in patients with severe congenital neutropenia receiving long-term G-CSF therapy.” Blood. Vol. 107, No. 12, pp. 4628-4635. June 15, 2006. (Prepublished online as a Blood First Edition Paper on February 23, 2006; DOI 10.1182/blood-2005-11-4370.)
Media contact:
Jennifer Schraag
Communications director
National Neutropenia Network
(480) 219-5921
Source: National Neutropenia Network
###
