Recent evidence for mitochondrial mutations associated with Alzheimers disease (AD) suggests the possibility of maternal transmission of this illness. We investigated this hypothesis by examining, in a variety of ways, the risk of a primary progressive dementia (PPD) in the parents (n = 650) and siblings (n = 1,220) of 325 AD probands. The results did not support maternal transmission in AD: The mothers of AD probands were not at greater risk of PPD than the fathers or the sisters of AD probands; the offspring of affected mothers were not at greater risk than the offspring of affected fathers or families with no affected parent; and, after selecting those proband families with evidence for increased familial loading, such families did not more frequently have affected mothers than fathers. In contrast, the cumulative risk of PPD in fathers of AD probands, while similar to that of mothers, was significantly increased over the brothers of AD probands. In addition, the cumulative risk curve of PPD in the offspring of affected fathers was significantly higher than the offspring of no affected parents. While no evidence for maternal transmission in AD was observed, unexpectedly, we did find evidence of increased paternal transmission.
Enhancing information capacity that can be used to improve services for people with disabilities remains an ongoing public health challenge. Research that can lead to improved state data systems for this population is still in its infancy. In this exploratory study, we have identified common characteristics needed to manage program services within one state's provider network and proposed a conceptual framework for developing a statewide system. We identified three broad information areas: assessment, administration, and assurance. Linking data elements to a program's information deficiencies allows lead state agencies responsible for public health functions for persons with disabilities to facilitate administrative coordination between programs having mutual information and management needs. By implementing strategies that share information without jeopardizing program autonomy, states can improve services for people with disabilities. Incorporating this framework extends the boundaries of a comprehensive disability information system beyond survey monitoring.pressed to keep up with the need for data linked to outcomes. State surveys needed to accurately identify the prevalence of people with disabilities are very costly and not administered on a regular basis in most states. This has hindered policy and program development.This article addresses this problem at its root by examining data used by programs serving persons with disabilities in Kansas to develop a conceptual framework for surveillance statewide. This exploratory approach complements existing state efforts to acquire primary data from the general population by looking more closely at the common information elements of the programs people with disabilities use to help them support daily life or independent living. Taking this approach statewide offers state health departments the opportunity to track services among different agencies and understand the effects of the programs these agencies offer, and expands the capacity to measure outcomes as individuals transition from one program to the next.Although not without its own difficulties, this approach has the advantage of connecting people with disabilities to services much in the same way that hospital or insurance claims data are used to monitor patient care, compare provider practice patterns, or more closely analyze program efficiency. Similar to the use of claims data, this approach is not intended to replace primary data collection, but rather to describe the exWith the advent of the Americans with Disabilities Act (ADA) in 1990, there has been an increased need to quantify and monitor the number of people with disabilities more accurately. Reasons for this extend well beyond economic and social impact (Barnard, 1990;Blanck, 1997;Christopher, 1995;Stein, 2000). Until we have obtained a clear understanding of which people among this population are using what services and how this usage has influenced their lives, the effectiveness of this monumental legislation cannot be accurately measured. The...
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