III 

110TH CONGRESS 

2D SESSION H. CON. RES. 163 

IN THE SENATE OF THE UNITED STATES 

JUNE 27, 2008 

Received and referred to the Committee on Health, Education, Labor, and 

Pensions 

CONCURRENT RESOLUTION 

Expressing the sense of Congress in support of further research and activities to increase public awareness, professional education, diagnosis, and treatment of DandyWalker syndrome and hydrocephalus. 

Whereas Dandy-Walker syndrome is the most common congenital malformation of the cerebellum and its causes are 

largely unknown; 

Whereas between 10,000 and 40,000 people have DandyWalker syndrome in the United States; 

Whereas the incidence of Dandy-Walker syndrome is at least 

1 case per every 25,000 to 35,000 live births, 


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however this is likely a significant underestimate because 

of difficulties diagnosing the syndrome; 

Whereas the Metropolitan Atlanta Congenital Defects Program, Centers for Disease Control and Prevention reports that Dandy-Walker syndrome may affect as many 

as 1 in 5000 live born infants; 

Whereas approximately 70 to 90 percent of patients with 

Dandy-Walker syndrome have hydrocephalus; 

Whereas Dandy-Walker syndrome accounts for approximately 

1 to 4 percent of hydrocephalus cases; 

Whereas patients with Dandy-Walker syndrome present with 

developmental delay, enlarged head circumference, or 

signs and symptoms of hydrocephalus; 

Whereas Dandy-Walker syndrome affects males and females 

approximately equally; 

Whereas seizures occur in 15 to 30 percent of patients with 

Dandy-Walker syndrome; 

Whereas subnormal intelligence is manifested in 41 to 71 

percent of patients with Dandy-Walker syndrome; 

Whereas failure to diagnose Dandy-Walker syndrome with 

hydrocephalus in a Neonate or a child can cause serious 

neurologic complications; 

Whereas Dandy-Walker syndrome is named after former University of New Mexico neurosurgeon and professor Arthur E. Walker (1907–1995) and Walter E. Dandy 

(1883–1941), who first described the disorder in 1914; 

and 

Whereas there are 2 known researchers dedicated to DandyWalker Syndrome in the United States and additional investigators are needed: Now, therefore, be it 


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1 Resolved by the House of Representatives (the Senate 

2 concurring), That— 

3 (1) Congress commends the Director of the Na4 tional Institutes of Health for working with leading 

5 scientists and researchers to organize the first Na6 tional Institutes of Health conference on hydro7 cephalus in September 2005 and the Inaugural 

8 ‘‘Cerebellar Development: Bench to Bedside Inter9 national Conference’’ in November 2006; and 

10 (2) it is the sense of Congress that— 

11 (A) the Director of the National Institutes 

12 of Health should continue the current collabora13 tion, with respect to Dandy-Walker syndrome, 

14 among the National Human Genome Research 

15 Institute, the National Institute of Biomedical 

16 Imaging and Bioengineering, the National In17 stitute of Child Health and Human Develop18 ment, the National Institute of Neurological 

19 Disorders and Stroke, and the Office of Rare 

20 Diseases; 

21 (B) further research into the epidemiology, 

22 diagnosis, pathophysiology, disease burden, and 

23 improved treatment of Dandy-Walker syndrome 

24 and hydrocephalus should be conducted and 

25 supported; and 


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1 (C) public awareness and professional edu2 cation regarding Dandy-Walker research should 

3 increase through partnerships between the Fed4 eral Government and patient advocacy organi5 zations, such as the Dandy-Walker Alliance and 

6 the Hydrocephalus Association. 

Passed the House of Representatives June 26, 2008. 

Attest: LORRAINE C. MILLER, 

Clerk. 

By ROBERT F. REEVES, 

Deputy Clerk. 


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