```

[Congressional Bills 110th Congress]
[From the U.S. Government Publishing Office]
[H. Con. Res. 163 Referred in Senate (RFS)]

  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 Dandy-Walker 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 Dandy-Walker 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;

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 Dandy-Walker Syndrome in the 
        United States and additional investigators are needed: Now, therefore, 
        be it
    Resolved by the House of Representatives (the Senate concurring), 
That--
            (1) Congress commends the Director of the National 
        Institutes of Health for working with leading scientists and 
        researchers to organize the first National Institutes of Health 
        conference on hydrocephalus in September 2005 and the Inaugural 
        ``Cerebellar Development: Bench to Bedside International 
        Conference'' in November 2006; and
            (2) it is the sense of Congress that--
                    (A) the Director of the National Institutes of 
                Health should continue the current collaboration, with 
                respect to Dandy-Walker syndrome, among the National 
                Human Genome Research Institute, the National Institute 
                of Biomedical Imaging and Bioengineering, the National 
                Institute of Child Health and Human Development, the 
                National Institute of Neurological Disorders and 
                Stroke, and the Office of Rare Diseases;
                    (B) further research into the epidemiology, 
                diagnosis, pathophysiology, disease burden, and 
                improved treatment of Dandy-Walker syndrome and 
                hydrocephalus should be conducted and supported; and
                    (C) public awareness and professional education 
                regarding Dandy-Walker research should increase through 
                partnerships between the Federal Government and patient 
                advocacy organizations, such as the Dandy-Walker 
                Alliance and the Hydrocephalus Association.

            Passed the House of Representatives June 26, 2008.

            Attest:

                                            LORRAINE C. MILLER,

                                                                 Clerk.

                               By Robert F. Reeves,

                                                          Deputy Clerk.
```