•HRES 524 IH 
nosis and the most appropriate treatment for 
each patient; 
(C) commends Schneider Children’s Hos-
pital for providing the first DBA Comprehen-
sive Clinical Care Center for patients across the 
country, for developing the DBA Patient Reg-
istry which has proven a robust surveillance tool 
to understand the epidemiology, biology, and 
treatment of DBA, and for proving a valuable 
resource for investigators at a national level, 
working to understand DBA’s link to more 
prevalent disorders facing Americans; and 
(D) commends the Daniella Maria Arturi 
Foundation and the Diamond-Blackfan Anemia 
Foundation for their efforts to facilitate the 
successful collaboration among the National In-
stitutes of Health and the Centers of Disease 
Control and Prevention to achieve a successful 
multidisciplinary approach between clinical and 
scientific DBA efforts with the goal of short-
ening the life cycle of success realized between 
the laboratory and applied patient care; and 
(2) it is the sense of the House of Representa-
tives that the Federal Government has a responsi-
bility to— 
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•HRES 524 IH 
(A) encourage further efforts to clarify the 
natural history of DBA to— 
(i) advance hematopoietic research in 
the areas of bone marrow failure disorders; 
(ii) develop a well-characterized data-
base of patients linked to a cell and DNA 
repository to facilitate gene discovery; 
(iii) understand the cellular and mo-
lecular biology of DBA; 
(iv) understand the links to cancer 
and birth defects; and 
(v) provide models for preclinical gene 
therapy trials; 
(B) continue efforts to raise awareness and 
ease access to information about DBA among 
patient groups and the medical community to 
improve accuracy of diagnosis and identification 
of appropriate treatment options available; 
(C) encourage research efforts that will ad-
vance the treatment options available to pa-
tients with DBA and seek a cure; 
(D) encourage the National Institutes of 
Health to develop a cross-institutional research 
initiative to study ribosomal protein deficiencies 
in rare inherited disease, including DBA, 
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•HRES 524 IH 
among the relevant institute stakeholders inter-
ested in ribosome synthesis including— 
(i) the National Heart, Lung, and 
Blood Institute; 
(ii) the National Institute of Diabetes 
and Digestive and Kidney Diseases; and 
(iii) the National Cancer Institute; 
and 
(E) encourage the continued Federal sup-
port of the DBA Comprehensive Clinical Care 
Centers to further provide a definitive charac-
terization of the patients with DBA, which will 
expand research and clinical care in order to 
help manage this rare illness, while also ena-
bling hematologists, cancer researchers, geneti-
cists, basic scientists, and others to continue to 
utilize the Center to enhance the study of this 
disease to better understand its links to many 
other problems facing Americans relating to 
blood cell formation, cancer predisposition, 
birth defects, and more. 
Æ 
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