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Abstract Details

Clinical Characteristics of the First 500 Subjects in the Adult Hydrocephalus Clinical Research Network Registry
General Neurology
S27 - General Neurology: Improving Neurologic Care and the Impact of Therapeutics (1:33 PM-1:44 PM)
004
The characteristics of the adult population with hydrocephalus are not well described. The Adult Hydrocephalus Clinical Research Network (AHCRN), founded in 2014, initially comprised University of Calgary, University of British Columbia, Cleveland Clinic, Weill Cornell Medical College, Sinai Hospital of Baltimore, University of Washington, and University of Utah (Data Coordinating Center).
To describe the characteristics and clinical subtypes of patients over age 18 with hydrocephalus 

 

 

 

Adults ≥18 years were non-consecutively enrolled in a registry. Data includes symptoms, examination, neuropsychology screening, comorbidities, imaging, treatment, complications, and outcomes. Four categories were defined: Transition (treated before age 18), Congenital (congenital pattern, not treated before age 18), Acquired (secondary to known risk factors, treated or untreated), and Possible Idiopathic Normal Pressure Hydrocephalus (≥age 65 years, not previously treated). We report the first 519 subjects (2015-2017).

Demographics

-Sex: Female 42.0%, Male 58.0%

-Age at Enrollment: 59.8 ± 19.2 years (Range 18.1 - 90.7)

-Race: White 90.6%, Asian 5.0%, Black 1.7%, Missing/Other 2.7%

 

 

Transition

Congenital

Acquired

Possible INPH

 

N

(%)

 

 

N=86

16.6%

 

N=132

25.4%

 

N=88

17.0%

 

N=213

41.0%

Treatment at Enrollment

 

100%

Shunt 95.3%

ETV 14.0%

43.2%

Shunt 22.0%

ETV 21.2%

39.2%

Shunt 27.5%

ETV 11.8%

0%

By definition

 

Top Etiologies

 

-Myelomeningocele: 33.7%

-Aqueductal stenosis: 15.1%

-IVH of prematurity: 9.3%

 

-Communicating: 41.7%

-Aqueductal stenosis: 50.0%

-Aqueductal pattern: 15.2%

 

-Brain tumor: 28.4%

-Intraventricular adhesion, colloid cyst: 13.7%

-Nontraumatic SAH: 11.8%

-TBI: 9.8%

 

 

Lawton ADL Score

(lower=better)

 

3.1±4.0

 

1.5±2.7

 

4.1±5.9

 

5.5±5.2


The population of adults with hydrocephalus is diverse. A combined 42% have childhood onset, whether treated or untreated by age 18, and only 41% are possible INPH. The degree of impairment (Lawton ADL) is least in the Congenital group and worst in possible INPH. Only 37% were treated at the time of enrollment. More research on the lifespan needs and functional outcomes for adult hydrocephalus is needed.

Authors/Disclosures
Michael A. Williams, MD, FAAN (University of Washington School of Medicine)
PRESENTER
Dr. Williams has received personal compensation in the range of $0-$499 for serving as an officer or member of the Board of Directors for the Hydrocephalus Association, a not-for-profit patient advocacay organization. The institution of Dr. Williams has received research support from NASA. The institution of Dr. Williams has received research support from Translational Research Insitute for Space Health (TRISH). The institution of Dr. Williams has received research support from NINDS.
Mark Luciano, MD, PhD (Cleveland Clinic) No disclosure on file
No disclosure on file
Norman Relkin, MD, PhD (Weill Cornell Medical College) No disclosure on file
No disclosure on file
Heather Katzen, PhD Dr. Katzen has received personal compensation in the range of $0-$499 for serving on a Scientific Advisory or Data Safety Monitoring board for Adult Hydrocephalus Clinical Research Network. Dr. Katzen has received publishing royalties from a publication relating to health care.
No disclosure on file
Mark Hamilton, MD (Foothills Hospital, Dept of Neurosurgery) Dr. Hamilton has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Integra Canada. The institution of Dr. Hamilton has received research support from Hydrocephalus Association.