Process Evaluation to Document Crucial Moments in Development of the National Neurological Conditions Surveillance System at the U.S. Centers for Disease Control and Prevention

Background: Neurological conditions or disorders strike roughly 50 million Americans annually but accurate and comprehensive national estimates for many of these conditions are not available. In 2019, Congress provided $5 million to Centers for Disease Control and Prevention (CDC) to establish the National Neurological Conditions Surveillance System (NNCSS). CDC focused initial activities on multiple sclerosis and Parkinson’s disease. Purpose: We conducted a process evaluation to document and understand multifaceted work to implement a new surveillance activity for two neurological conditions. Setting: We conducted this evaluation with government personnel internal to the Center for Surveillance, Epidemiology, and Laboratory Services at the Centers for Disease Control and Prevention in Atlanta, GA. Intervention: A new public health surveillance activity for two neurological conditions, multiple sclerosis and Parkinson’s disease, that uses existing data resources and systems. Research design: The evaluation included interviews with CDC personnel and review of administrative and programmatic information. Data were analyzed and interpreted to identify crucial moments in the first year of funded work on NNCSS. The study revealed that this surveillance activity required diverse contributions and collaboration within the federal government and with non-governmental organizations. The findings can be used to guide work to enhance surveillance for many neurological conditions. Findings: The study revealed that this surveillance activity required diverse contributions and collaboration within the federal government and with non-governmental organizations. While collaboration is a cornerstone of public health practice, it is not always well-documented in planning or implementation of surveillance or other data-related activities. Keywords: program evaluation; surveillance; neurological conditions; neurological disorders; multiple sclerosis; Parkinson’s disease

Missense mutations in the copper transporter gene ATP7A cause X-Linked distal hereditary motor neuropathy

Distal hereditary motor neuropathies comprise a clinically and genetically heterogeneous group of disorders. We recently mapped an X-linked form of this condition to chromosome Xq13.1-q21 in two large unrelated families. The region of genetic linkage included ATP7A, which encodes a copper-transporting P-type ATPase mutated in patients with Menkes disease, a severe infantile-onset neurodegenerative condition. We identified two unique ATP7A missense mutations (p.P1386S and p.T994I) in males with distal motor neuropathy in two families. These molecular alterations impact highly conserved amino acids in the carboxyl half of ATP7A and do not directly involve the copper transporter's known critical functional domains. Studies of p.P1386S revealed normal ATP7A mRNA and protein levels, a defect in ATP7A trafficking, and partial rescue of a S. cerevisiae copper transport knockout. Although ATP7A mutations are typically associated with severe Menkes disease or its milder allelic variant, occipital horn syndrome, we demonstrate here that certain missense mutations at this locus can cause a syndrome restricted to progressive distal motor neuropathy without overt signs of systemic copper deficiency. This previously unrecognized genotype-phenotype correlation suggests an important role of the ATP7A copper transporter in motor-neuron maintenance and function

A description of a knowledge broker role implemented as part of a randomized controlled trial evaluating three knowledge translation strategies

<p>Abstract</p> <p>Background</p> <p>A knowledge broker (KB) is a popular knowledge translation and exchange (KTE) strategy emerging in Canada to promote interaction between researchers and end users, as well as to develop capacity for evidence-informed decision making. A KB provides a link between research producers and end users by developing a mutual understanding of goals and cultures, collaborates with end users to identify issues and problems for which solutions are required, and facilitates the identification, access, assessment, interpretation, and translation of research evidence into local policy and practice. Knowledge-brokering can be carried out by individuals, groups and/or organizations, as well as entire countries. In each case, the KB is linked with a group of end users and focuses on promoting the integration of the best available evidence into policy and practice-related decisions.</p> <p>Methods</p> <p>A KB intervention comprised one of three KTE interventions evaluated in a randomized controlled trial.</p> <p>Results</p> <p>KB activities were classified into the following categories: initial and ongoing needs assessments; scanning the horizon; knowledge management; KTE; network development, maintenance, and facilitation; facilitation of individual capacity development in evidence informed decision making; and g) facilitation of and support for organizational change.</p> <p>Conclusion</p> <p>As the KB role developed during this study, central themes that emerged as particularly important included relationship development, ongoing support, customized approaches, and opportunities for individual and organizational capacity development. The novelty of the KB role in public health provides a unique opportunity to assess the need for and reaction to the role and its associated activities. Future research should include studies to evaluate the effectiveness of KBs in different settings and among different health care professionals, and to explore the optimal preparation and training of KBs, as well as the identification of the personality characteristics most closely associated with KB effectiveness. Studies should also seek to better understand which combination of KB activities are associated with optimal evidence-informed decision making outcomes, and whether the combination changes in different settings and among different health care decision makers.</p

Can Public Health Researchers and Agencies Reconcile the Push From Funding Bodies and the Pull From Communities?

Responding to growing impatience with the limited application of research findings to health practices and policies, both funding bodies and communities are demanding that research show greater sensitivity to communities' perceptions, needs, and unique circumstances. One way to assure this is to employ participatory research—to engage communities at least in formulating research questions and interpreting and applying research findings and possibly also in selecting methods and analyzing data. "Community" should be interpreted broadly as all who will be affected by the research results, including lay residents of a local area, practitioners, service agencies, and policymakers. Participatory research should not be required of every project, but when results are to be used for, in, and by communities, those communities should collaborate not only in applying findings but also in determining the ways in which the findings are produced and interpreted

Prostate cancer screening in the midst of controversy: Canadian men\u27s knowledge, beliefs, utilization, and future intentions

Despite controversy about prostate cancer screening, administrative data show that the use of prostate specific antigen (PSA) testing in Canada has increased. This study sought to determine awareness and knowledge of prostate cancer and screening, use to date, and future intentions to have a digital rectal examination (DRE) and PSA test among Canadian men aged 40 and over. Data were collected through a Canada-wide cross-sectional random digit dial telephone survey of 629 men. Awareness of DRE and PSA, use to date, and future intended use varied with age and education. Although only 9% of respondents had had PSA testing for screening, future intentions to undergo this test were higher than use to date. Knowledge of prostate cancer and screening controversies was low, and men received more information about PSA from the media than from doctors. Men would, therefore, benefit from age- and education-specific information regarding the factors to consider in making an informed choice about prostate cancer screening