A Model for a Regional System of Care to Promote the Health and Well-Being of People with Rare Chronic Genetic Disorders

Bibliographic Data

ID11031889
AuthorsJudith Baker (0000-0002-7850-0027, Center for Cancer and Blood Disorders), Judith R Baker (Judith R. Baker is with the Federal Hemophilia Treatment Centers/Region IX, Children’s Center for Cancer and Blood Disorders, Childrens Hospital Los Angeles, Calif. Sally O. Crudder is with the Division of Hereditary Blood Disorders, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Ga. Brenda Riske is with the Mountain States Regional Hemophilia and Thrombosis Center at the University of Colorado at Denver & Health Sciences Center,...), Sally O Crudder (Judith R. Baker is with the Federal Hemophilia Treatment Centers/Region IX, Children’s Center for Cancer and Blood Disorders, Childrens Hospital Los Angeles, Calif. Sally O. Crudder is with the Division of Hereditary Blood Disorders, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Ga. Brenda Riske is with the Mountain States Regional Hemophilia and Thrombosis Center at the University of Colorado at Denver & Health Sciences Center,...), Brenda Riske (0000-0001-7716-3703, Judith R. Baker is with the Federal Hemophilia Treatment Centers/Region IX, Children’s Center for Cancer and Blood Disorders, Childrens Hospital Los Angeles, Calif. Sally O. Crudder is with the Division of Hereditary Blood Disorders, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Ga. Brenda Riske is with the Mountain States Regional Hemophilia and Thrombosis Center at the University of Colorado at Denver & Health Sciences Center,...), Val Bias (Judith R. Baker is with the Federal Hemophilia Treatment Centers/Region IX, Children’s Center for Cancer and Blood Disorders, Childrens Hospital Los Angeles, Calif. Sally O. Crudder is with the Division of Hereditary Blood Disorders, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Ga. Brenda Riske is with the Mountain States Regional Hemophilia and Thrombosis Center at the University of Colorado at Denver & Health Sciences Center,...), Ann Forsberg (Judith R. Baker is with the Federal Hemophilia Treatment Centers/Region IX, Children’s Center for Cancer and Blood Disorders, Childrens Hospital Los Angeles, Calif. Sally O. Crudder is with the Division of Hereditary Blood Disorders, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Ga. Brenda Riske is with the Mountain States Regional Hemophilia and Thrombosis Center at the University of Colorado at Denver & Health Sciences Center,...), Ann D Forsberg (Center for Cancer and Blood Disorders)
Year2005
Volume95
Issue11
Pages1910-1916
Publication date2005-11-01
Peer ReviewedYes
Open AccessNo
TypeARTICLE
VenueAmerican Journal of Public Health (JOURNAL)
Journal identifiersISSN: 0090-0036 • E-ISSN: 1541-0048
PublisherAmerican Public Health Association (PUBLISHER • US)
DOI10.2105/ajph.2004.051318
PMID16195525
PMCIDPMC1449458
OpenAlexW2083250557
LanguageEN
Citations received4
References cited25

People with rare, inherited chronic health conditions, such as hemophilia, face added physical, social, emotional, and fiscal challenges beyond those that are common to more prevalent chronic conditions. In 1975, a partnership among clinicians, consumers, and government agencies created a nationwide regional health delivery system that increased access to clinical care, prevention, and research, thereby improving health outcomes for people with hemophilia in the United States. Today, more than 130 Comprehensive Hemophilia Diagnostic and Treatment Centers in 12 regions serve 70%–80% of the nation’s hemophilia patients. Health care leaders and advocates for other rare, expensive, chronic disorders may find that regionalization improves survival and reduces disability among affected populations. However, diverse and stable resources are needed to sustain such a model in our profit-oriented US health care arena

Business · Economic growth · Environmental health · Family medicine · General partnership · Government (linguistics) · Health care · Public health · Adolescent and Pediatric Healthcare · Chronic Disease Management Strategies · Diabetes Treatment and Management · Finance · Medicine · Nursing

Tools

Open DOISci-HubOpen Access