ABSTRACT
Our objective was to describe a unique national resource to facilitate amyotrophic lateral sclerosis (ALS) research, the Department of Veterans Affairs Biorepository Brain Bank. Enrolled veterans receive biannual telephone follow-up to collect clinical data until death including the ALS Functional Rating Scale-Revised (ALSFRS-R). A comprehensive post mortem examination is performed and a wide range of fixed and frozen brain and spinal cord samples are banked. As of December 2012, 240 veterans were enrolled from 47 states and post mortem tissue recoveries were performed on 100 veterans from 37 states. Average disease duration was 13.5 (range 3-45) years. Average follow-up for living subjects was 3.1 years and average ALSFRS-R score was 23.5 compared to 25.9 (12-24 months earlier), indicating slow disease progression. ALS was confirmed by post mortem examination in 97% of cases. Eighty-six percent of cases were TDP-43-positive. Additional neuropathological diagnoses include Lewy body disease (13%), frontotemporal lobar degeneration (6.3%), chronic traumatic encephalopathy with motor neuron disease (3.2%), and Alzheimer's disease (2.1%). Tissue RIN values were ≥ 4.0 in 88% of cases. In conclusion, the availability of high quality fixed and frozen CNS tissue from this well characterized cohort is an important resource to facilitate research into genetic and environmental risk factors and clinical pathological relationships in ALS.
Subject(s)
Amyotrophic Lateral Sclerosis/diagnosis , Amyotrophic Lateral Sclerosis/epidemiology , Biomedical Research/methods , Brain/pathology , United States Department of Veterans Affairs , Veterans , Adult , Aged , Aged, 80 and over , Biomedical Research/trends , Cohort Studies , Female , Follow-Up Studies , Humans , Male , Middle Aged , Prospective Studies , Registries , Tissue Banks/trends , United States/epidemiology , United States Department of Veterans Affairs/trends , Young AdultABSTRACT
Data on their children's adoptions and their own subsequent adjustment were provided by 125 birthfathers. Paternal age at the child's birth, involvement in the adoption process, and the major reason for adoption determined the birthfathers' current views of adoption. Search for the child was correlated with hopes of retrieval. Loss of the child remained an unresolved issue independent of other areas of functioning. Legal and procedural implications are discussed.
Subject(s)
Adaptation, Psychological , Adoption , Fathers/psychology , Adult , Attitude , Father-Child Relations , Humans , Male , Middle AgedABSTRACT
In order to ascertain the effects on subsequent life adjustment of having relinquished a child for adoption, a survey was conducted among 334 individuals, most of whom are members of Concerned United Birthparents. Findings indicate that having surrendered a child is perceived by these respondents as having a protracted negative influence on their lives in the areas of marriage, fertility, and parenting. Implications for adoption work and policy are discussed.