IV 

110TH CONGRESS 

1ST SESSION H. CON. RES. 163 

Expressing the sense of Congress in support of further research and activities 

to increase public awareness, professional education, diagnosis, and treatment of Dandy-Walker syndrome and hydrocephalus. 

IN THE HOUSE OF REPRESENTATIVES 

MAY 24, 2007 

Mrs. WILSON of New Mexico (for herself, Mr. VAN HOLLEN, Mr. ADERHOLT, 

Mr. BONNER, Mr. BACHUS, and Mr. RYAN of Ohio) submitted the following concurrent resolution; which was referred to the Committee on 

Energy and Commerce 

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, however 

this is likely a significant underestimate because of difficulties diagnosing the syndrome; 

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•HCON 163 IH 

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 

1 Resolved by the House of Representatives (the Senate 

2 concurring), That— 

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1 (1) Congress commends the Director of the Na2 tional Institutes of Health for working with leading 

3 scientists and researchers to organize the first Na4 tional Institutes of Health conference on hydro5 cephalus in September 2005 and the Inaugural 

6 ‘‘Cerebellar Development: Bench to Bedside Inter7 national Conference’’ in November 2006; and 

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

9 (A) the Director of the National Institutes 

10 of Health should continue the current collabora11 tion, with respect to Dandy-Walker syndrome, 

12 among the National Human Genome Research 

13 Institute, the National Institute of Biomedical 

14 Imaging and Bioengineering, the National In15 stitute of Child Health and Human Develop16 ment, the National Institute of Neurological 

17 Disorders and Stroke, and the Office of Rare 

18 Diseases; 

19 (B) further research into the epidemiology, 

20 diagnosis, pathophysiology, disease burden, and 

21 improved treatment of Dandy-Walker syndrome 

22 should be conducted and supported; 

23 (C) the National Institutes of Health 

24 should take the lead in sponsoring an annual 

25 workshop to increase awareness and set namstockstill on PROD1PC66 with BILLS

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1 tional research priorities for Dandy-Walker syn2 drome and hydrocephalus; 

3 (D) the Centers for Disease Control and 

4 Prevention should form a coordinating com5 mittee for Dandy-Walker syndrome and hydro6 cephalus research, which would annually report 

7 to the public its findings on the progress in the 

8 epidemiology, pathophysiology, disease burden, 

9 treatment improvements, diagnoses, and aware10 ness for Dandy-Walker syndrome and hydro11 cephalus; and 

12 (E) public awareness and professional edu13 cation regarding Dandy-Walker research should 

14 increase through partnerships between the Fed15 eral Government and patient advocacy organi16 zations, such as the Dandy-Walker Alliance and 

17 the Hydrocephalus Association. 

Æ 

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