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, 30 (3), 191-204

Genes and Environmental Exposures in Veterans With Amyotrophic Lateral Sclerosis: The GENEVA Study. Rationale, Study Design and Demographic Characteristics

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Genes and Environmental Exposures in Veterans With Amyotrophic Lateral Sclerosis: The GENEVA Study. Rationale, Study Design and Demographic Characteristics

Silke Schmidt et al. Neuroepidemiology.

Abstract

Recent reports of a potentially increased risk of amyotrophic lateral sclerosis (ALS) for veterans deployed to the 1990-1991 Persian Gulf War prompted the Department of Veterans Affairs to establish a National Registry of Veterans with ALS, charged with the goal of enrolling all US veterans with a neurologist-confirmed diagnosis of ALS. The Genes and Environmental Exposures in Veterans with ALS study (GENEVA) is a case-control study presently enrolling cases from the Department of Veterans Affairs registry and a representative sample of veteran controls to evaluate the joint contributions of genetic susceptibility and environmental exposures to the risk of sporadic ALS. The GENEVA study design, recruitment strategies, methods of collecting DNA samples and environmental risk factor information are described here, along with a summary of demographic characteristics of the participants (537 cases, 292 controls) enrolled to date.

Figures

Fig. 1.
Fig. 1.
a Ascertainment of GENEVA cases. ∗ Withdrawal before collection: 56.2%; ineligible after medical record review (no MND): 23.1%; closeout: 10.8%; sample could not be obtained during nurse visit: 10.0%. ∗∗ Reasons for ineligibility: presence of Alz heimer disease or other form of dementia (n = 5); change in disease status by time of first contact (to PLS, indeterminate or no MND) (n = 8); withdrawal from the registry or its DNA bank by the time of first contact (n = 2); telephone interview not feasible for other reasons (n = 4). b Ascertainment of GENEVA controls. ∗ Correct telephone number could not be identified: 57.8%; closeout after leaving multiple voicemail messages: 37.7%; no answering machine, and telephone was never picked up: 4.5%. ∗∗ Reasons for ineligibility: not US veteran (n = 4); neuropathy (n = 9); Alzheimer disease or other form of dementia (n = 7); Parkinson disease (n = 4); multiple sclerosis (n = 1); post-polio syndrome (n = 1); myasthenia gravis (n = 2); other (n = 3).
Fig. 1.
Fig. 1.
a Ascertainment of GENEVA cases. ∗ Withdrawal before collection: 56.2%; ineligible after medical record review (no MND): 23.1%; closeout: 10.8%; sample could not be obtained during nurse visit: 10.0%. ∗∗ Reasons for ineligibility: presence of Alz heimer disease or other form of dementia (n = 5); change in disease status by time of first contact (to PLS, indeterminate or no MND) (n = 8); withdrawal from the registry or its DNA bank by the time of first contact (n = 2); telephone interview not feasible for other reasons (n = 4). b Ascertainment of GENEVA controls. ∗ Correct telephone number could not be identified: 57.8%; closeout after leaving multiple voicemail messages: 37.7%; no answering machine, and telephone was never picked up: 4.5%. ∗∗ Reasons for ineligibility: not US veteran (n = 4); neuropathy (n = 9); Alzheimer disease or other form of dementia (n = 7); Parkinson disease (n = 4); multiple sclerosis (n = 1); post-polio syndrome (n = 1); myasthenia gravis (n = 2); other (n = 3).
Fig. 2.
Fig. 2.
Distribution of neurologist-confirmed diagnoses of ALS and MND for 3 groups of patients: (1) enrolled into National Registry of Veterans with ALS (excluding those with no ALS/MND diagnosis); (2) enrolled, with blood or mouthwash sample available in Registry DNA Bank; (3) enrolled and interviewed for GENEVA study. PMA = Progressive muscular atrophy; PBP = progressive bulbar palsy; PLS = primary lateral sclerosis; indet. = indeterminate clinical status.
Fig. 3.
Fig. 3.
Distribution of time between first ALS diagnosis and enrollment into National Registry of Veterans with ALS for 3 groups of patients: (1) enrolled into National Registry of Veterans with ALS (excluding those with no ALS/MND diagnosis); (2) enrolled, with blood or mouthwash sample available in Registry DNA Bank; (3) enrolled and interviewed for GENEVA study.

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