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Information for Healthcare Providers

Photo: Children playing healthcare provider roles

This section of the website has information about DBA for healthcare providers, including free materials to give to patients.

Resources

Guidelines for Diagnosing and Treating DBA

These guidelines include diagnostic criteria, evaluation of current treatment options such as corticosteroid and transfusion therapies and stem cell transplantation, and a proposition for optimizing patient care. Also presented are a review of congenital anomalies, genetics and reproductive choices, cancer predisposition in patients with DBA, and management of pregnancy.


Free Materials for Patients

View and print free educational materials to give to DBA patients, including a brochure, fact sheets on treatments, and a medical care notebook.


DBA Registry (DBAR)
DBA is an extremely rare disorder and there are gaps in the understanding of the disorder. For this reason, the DBAR was established to collect clinical data on DBA patients and their families and offers participation in research protocols. DBAR is a research organization dedicated to acquiring, analyzing and disseminating information on DBA to affected individuals, their families and medical professionals. The DBAR has collected information on more than 600 patients in its database.

National DBA Resource Centers

CDC is working with a network of clinical resource centers to advance research and improve the quality of life of people with DBA. There are currently four resource centers:

Children’s Hospital Boston
Colin A. Sieff, MB.BCh, FRCPath
Director, Bone Marrow Failure Program
Division of Hematology/Oncology
Main number: 617-355-8246

Steven and Alexandra Cohen Children’s Medical Center of New York
Adrianna Vlachos, MD
Head, Bone Marrow Failure Program
Director, Diamond Blackfan Anemia Registry
Main number: 516-562-1506

Stanford University Medical Center
Bertil Glader, MD, PhD
Stanford University School of Medicine
Lucile Packard Children’s Hospital
Professor of Pediatrics and Pathology
Division of Hematology/Oncology
Main number: 650-723-5535

University of Texas Southwestern Medical Center
Zora R. Rogers, MD
Professor and Clinical Director
Pediatric Bone Marrow Failure Program
Main number: 214-456-6102

Conferences

The 2nd National Conference on Blood Disorders in Public Health
March 12-14, 2012 in Atlanta, Georgia
The Division of Blood Disorders, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention; the Maternal and Child Health Bureau, Health Resources and Services Administration; the Division of Blood Diseases and Resources, National Heart, Lung, and Blood Institute and the Office of Rare Diseases Research, National Institutes of Health; the American Society of Hematology; and Hemophilia of Georgia are pleased to announce the 2nd National Conference on Blood Disorders in Public Health.

The purpose of this conference is to further advance the public health context described during the 1st National Conference on Blood Disorders in Public Health (March 2010) and to promote the adoption and full integration of evidenced-based and evidenced-informed public health functions that are capable of promoting the health of and improving outcomes among people with a blood disorder. For more information please go to www.blooddisordersconferences.com.

Annual International Consensus Conference
The DBA Annual International Consensus Conference provides interaction with the international scientific and physician community from around the globe in order to improve patient care. Coordination of the international experts in this field has resulted in a Clinical Care Consensus Document offering the latest opinions on how to diagnose and manage the care of patients with DBA. Please visit http://www.dmaf.org/ for more information about the conference.

53rd annual meeting and exposition of the American Society of Hematology
December 10-13, 2012 in San Diego, CA

The American Society of Hematology (ASH) will host its 53rd annual meeting in San Diego, where it will offer numerous sessions covering hematology and other important health topics. For more information visit: www.hematology.org/Meetings/Annual Meeting/.

The 25th Annual Meeting of the American Society of Pediatric Hematology/Oncology
May 9-12, 2012 in New Orleans, LA

The most comprehensive and focused educational opportunity for pediatric hematologists/oncologists, the ASPHO 25th Annual Meeting provides a unique opportunity to network and collaborate with fellow subspecialists in pediatric hematology/oncology. For more information visit: http://www.aspho.org/education/content/meeting.html.

 

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