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Reliability of statistics on Down's syndrome notifications.

OBJECTIVES: To evaluate the completeness of notifications of Down's syndrome live births and terminations to the Office for National Statistics (ONS) using data from the National Down Syndrome Cytogenetic Register (NDSCR). To examine the agreement of observed birth prevalence of Down's syndrome with the expected birth prevalence derived from published maternal age specific rates. METHODS: The number of live births (adjusted to allow for the estimated underascertainment) and the number of terminations due to fetal Down's syndrome from NDSCR were compared with those figures reported to the ONS. Subsequently, using the NDSCR figures, the live birth prevalence of Down's syndrome that would have occurred in the absence of antenatal diagnosis and selective termination was calculated in England and Wales in the years 1990-1993. These figures were compared with those derived by applying published age specific prevalences to the maternal age distribution in England and Wales. RESULTS: It is estimated that only 48% and 46% respectively of Down's syndrome live births and terminations of pregnancy were notified to ONS between 1990 and 1993. The annual expected birth prevalences of Down's syndrome obtained by applying maternal age specific prevalences to the maternal age distribution were in close agreement with observed rates from NDSCR. CONCLUSIONS: There is considerable underreporting of Down's syndrome births and terminations to ONS. The NDSCR data are more complete and therefore the effects of screening should be monitored using data from this source, or using estimates derived from the age specific rates of Down's syndrome.

Abortion, Induced↗

The validity of addict notifications.

Two representative samples of males first notified as addicts during 1969, one by hospitals and the other by penal establishments, were followed up for five years. It was found that 95 per cent of the hospital sample, but only 30 per cent of the penal sample, were addicted to opiates at some time during this follow-up, as judged by Home Office records. Notification may depend as much upon the setting and circumstances in which doctors see their patients as on their clinical judgement of a 'notifiable' case of addiction.

Heroin Dependence↗

A real-time tracking, notification, and web-based enrollment system for emergency department research.

The authors describe the development of a real-time tracking, notification, and Web-based enrollment system designed specifically to facilitate emergency department research. The system was developed in a cooperative arrangement between an emergency medicine researcher and a medical information software company. The system design and utilization are described as well as the security measures to ensure compliance with Health Insurance Portability and Accountability Act (HIPAA) regulations and database security.

Computer Security↗

Real-time notification of laboratory data requested by users through alphanumeric pagers.

The authors developed a novel feature in their clinical information systems, which allows clinicians to request notification about laboratory results. Clinicians who are expecting a particular laboratory result for a particular patient can request a report of the result via an alphanumeric pager as soon as the result is filed into the patient database. This feature has gained popularity and is heavily used in both inpatient and outpatient settings, at a rate of about 2,300 times per month. This event-monitor-based feature illustrates one way that information technology can be applied to improve communication in health care.

Clinical Laboratory Information Systems↗

A systematic review of strategies for partner notification for sexually transmitted diseases, including HIV/AIDS.

This review compares the effects of various sexually transmitted disease (STD) partner-notification strategies. Using review methods endorsed by the Cochrane Collaboration, it updates previous reviews, and addresses some of their methodological limitations. It includes 11 randomized controlled trials (RCTs) comparing two or more strategies, including 8014 participants. Only two trials were conducted in developing countries, and only two trials were conducted among HIV-positive patients. The review found moderately strong evidence that: (1) provider referral alone, or the choice between patient and provider referral, when compared with patient referral among patients with HIV or any STD, increases the rate of partners presenting for medical evaluation; (2) contract referral, when compared with patient referral among patients with gonorrhoea, results in more partners presenting for medical evaluation; (3) verbal, nurse-given health education together with patient-centred counselling by lay workers, when compared with standard care among patients with any STD, results in small increases in the rate of partners treated. The review concludes that there is a need for evaluations of interventions combining provider training and patient education, for evaluations conducted in developing countries, and for the measurement of potential harmful effects.

Contact Tracing↗

HIV partner notification: a 2002 Victorian audit.

This audit was carried out in August 2003 and examined HIV notification data in Victoria. We aimed to determine the proportion of partners reported as being traced from newly diagnosed HIV individuals, the type of contact tracing used and identify the number of HIV cases newly diagnosed from contact tracing. We compared men who have sex with men (MSM) with all other newly diagnosed HIV individuals in Victoria (non-MSM). Of the 215 newly diagnosed HIV-positive individuals, 49% (n = 105) could potentially carry out contact tracing. There was a difference between MSM and non-MSM in the proportion of contactable partners (44% vs 63% respectively, P = 0.017). MSM less commonly used provider referral than non-MSM (12% vs 53% respectively, P < 0.001) but more commonly used patient referral (41% MSM vs 9% non-MSM, P = 0.001). Of the 13 individuals found to be HIV-positive through contact tracing, nine (69%) were non-MSM.

Adolescent↗

New technology and partner notification--why aren't we using them?

Partner notification is crucial to the effective control of sexually transmissible infections (STIs) and has not changed substantially over recent years. New technology for communication has been rapidly adopted in our communities but little work has been carried out about its role in contact tracing. Text messaging, emails and the Internet could be useful tools for both provider and patient referral but considerable ethical considerations are involved. Technology is available to help protect the basic tenets of confidentiality and privacy but more thorough exploration of these methods is required to establish efficacy and appropriateness in contact tracing. This research is important if we are to procure an evidence base for future contact tracing strategies rather than allowing these methods to become commonplace at the initiation of our clients.

Cell Phone↗

Treatment and partner notification outcomes for gonorrhoea: effect of ethnicity and gender.

We assessed if gender and ethnicity were associated with differences in the number of patients satisfactorily treated and number of partners successfully treated for genital gonococcal infection by reviewing 400 cases. There were no differences in the rates of satisfactory treatment of gonorrhoea between men and women and the different ethnic groups. There was no difference in satisfactory partner treatment rates by ethnic origin; however, men were less likely to have their contacts satisfactorily treated within 28 days of diagnosis (odds ratio = 0.05, 95% confidence interval 0.3-0.7). This inequality may lead to difficulties in reducing the number of new gonorrhoea cases. More research is needed to find out why men behave differently from women regarding partner notification for genital gonorrhoea infection.

Adult↗

Audit of the use of benzathine penicillin, post-treatment syphilis serology and partner notification of patients with early infectious syphilis.

Recent increases in the incidence of early infectious syphilis have been particularly noted in men who have sex with men (MSM). Case-notes of 40 consecutive patients with infectious syphilis and follow-up data for one year were audited. Of the 40 patients, six were HIV co-infected. In all, 31 men received benzathine penicillin as first line while the remaining had other treatments. About 17 (42.5%) failed to attend for any post-treatment serological tests. Of the remainder, 17 (42.5%) attended for the first appointment and only 13 (32.5%) attended for the full one year follow-up. In all, 40 men in the study had 362 sexual contacts of which only 44 (12.2%) elected to be screened. This study illustrates the successful use of benzathine penicillin as first-line treatment, lack of patient compliance with post-treatment serological follow-up and difficulty with partner notification.

Adolescent↗

Policy interventions designed to combat sexual violence: community notification and civil commitment.

Much attention has been given to the problem of sexual predators and the struggles of the legal-justice system to contain them. In response to public outcry over high-profile sex crimes, federal and state legislators have responded in the past decade with innovative but controversial public policy initiatives, called "sexually violent predator statutes." In 1996 President Clinton signed "Megan's Law," mandating all 50 states to develop requirements for convicted sex offenders to register with local law enforcement agencies and to notify communities when a sex offender lives in close proximity. Less publicized have been the civil commitment statutes introduced by 16 states which allow convicted sex offenders to be evaluated for involuntary and indefinite confinement in a psychiatric hospital following their release from prison. This article will review the literature regarding community notification and civil commitment as interventions designed to combat sexual violence. The history and context of each policy will be discussed, as will a review of available research evaluating the impact of each policy. Implications for future research and social policy will be examined.

Adult↗

Bone and joint tuberculosis. A survey of notifications in England and Wales.

Of the 4172 patients in a survey of all cases of tuberculosis notified in a six-month period in England and Wales in 1978-79, 198 had a bone or joint lesion; 79 were white and 108 were of Indian subcontinent (Indian, Pakistani or Bangladeshi) ethnic origin. The estimated annual notification rates for orthopaedic tuberculosis were 29 per 100 000 for the Indian subcontinent group and 0.34 per 100 000 in the white group, a ratio of 85 to 1. Rates increased with age in both groups. The spine was the most common site, and was affected in 30% of the white patients and 43% of the Indian subcontinent patients; the distribution of other sites was similar in both groups. Positive culture from a bone or joint lesion was obtained in 99 (50%) of the 198 patients (58% of white patients and 47% of the Indian subcontinent patients). Bacteriological or histological confirmation of tuberculosis either from a bone or joint lesion or from another site was obtained in 68% of the patients. Mycobacterium tuberculosis was isolated from the orthopaedic lesions in 79 of the 82 patients with identification test results and M. bovis in the 3 remaining patients. Of the 61 patients with M. tuberculosis and with no history of previous chemotherapy, 5 had resistant strains compared with 1 of the 18 patients who had previously received chemotherapy. All 6 patients with resistant strains were of Indian subcontinent ethnic origin.

Adolescent↗

Newborn screening program practices in the United States: notification, research, and consent.

OBJECTIVE: To define current practice among US newborn screening programs for notification of results, research, and consenting procedures. METHODS: A telephone survey of all US newborn screening program supervisors. RESULTS: All 51 programs participated. All states reported abnormal results to the infant's physician, and some also reported to the hospital and parents. Cases with abnormal results were tracked to different endpoints but usually (92.1%) at least until a follow-up appointment was made. A total of 66.6% of programs can communicate with programs in other states; 9.8% enable families to suppress reporting of results to the infant's physician. No state has a mechanism for parents to prevent results from entering the medical record. Parents or physicians who request results are often authenticated by providing their name (52.9%). Many programs (45.1%) report only to physicians and require just their name (43.5%), an identification number (17.4%), a letter (26.1%), or a parent's signature (26.1%). A total of 70.6% retain residual blood samples; of these, only 8.3% store them completely devoid of patient identifiers. A total of 49.0% of programs aggregate data for research. In 16.0% of these, the data are publicly available. In 24.0%, researchers obtain approval at their own institution; in 24.0%, researchers obtain approval through the state laboratory Institutional Review Board. In 74.5% of programs, parents are notified but not asked for consent before collection of the sample; 19.6% neither notify parents nor obtain consent before screening. CONCLUSIONS: There is wide variation in practice among the US newborn screening programs. Because the programs collectively manage a comprehensive nationwide genomic databank, careful consideration of how information technology and high-throughput genomic analysis are used will be essential to allow progress in clinical care, public health, and research while protecting individual privacy.

Communicable Disease Control↗

Sentinel Event Notification System for Occupational Risks (SENSOR): the concept.

Although many states have laws that require health providers to report cases of occupational illness and injury, most states do not maintain a comprehensive system that actively identifies and targets potential sources of case reports and then responds to such reports. NIOSH has developed a Sentinel Event Notification System for Occupational Risks (SENSOR) that uses targeted sources of sentinel providers to recognize and report selected occupational disorders to a state surveillance center. SENSOR is a cooperative state-federal effort designed to develop local capability for preventing selected occupational disorders. To demonstrate the feasibility of this approach, NIOSH initially funded seven SENSOR projects in 1987 and three additional projects in early 1988 (Table 1). Currently, these projects are in the preliminary stages of organization and start-up, with some having begun to receive case reports. As funds become available, NIOSH intends to gradually expand the scope of the program to include additional states over the next several years.

Humans↗

Behavior changes after notification of HIV infection.

BACKGROUND: To learn more about how people who did not volunteer for testing react to information about HIV infection, we assessed short-term behavior changes in HIV-positive blood donors. METHODS: Blood donors who were notified at the New York Blood Center that they were HIV positive were asked to participate in a study. A nurse elicited a medical history, performed a limited medical examination, and asked participants to complete a questionnaire that included questions about drug use, sexual behavior, and psychological characteristics. Participants were asked to return in 2 weeks to complete another questionnaire. RESULTS: Many fewer men and women reported engaging in unsafe sexual behaviors in the 2 weeks preceding the follow-up visit than had reported such behaviors prior to notification. These changes were greater than those other investigators have reported, but about 40% of the participants still reported unsafe sexual activity at the follow-up interview. CONCLUSIONS: To make nonvolunteer screening programs for HIV infection more effective in reducing the spread of HIV infection, we need to learn more about how to help people change their high-risk behaviors.

Adolescent↗

HIV prevention and the two faces of partner notification.

In the cases of medical patients with sexually transmitted diseases (particularly those with the human immunodeficiency virus), two distinct approaches exist to notifying sexual and/or needle-sharing partners of possible risk. Each approach has its own history (including unique practical problems of implementation) and provokes its own ethical dilemmas. The first approach--the moral "duty to warn"--arose out of clinical situations in which a physician knew the identity of a person deemed to be at risk. The second approach--that of contact tracing--emerged from sexually transmitted disease control programs in which the clinician typically did not know the identity of those who might have been exposed. Confusion between the two approaches has led many to mistake processes that are fundamentally voluntary as mandatory and those that respect confidentiality as invasive of privacy. In the context of the AIDS epidemic and the vicissitudes of the two approaches, we describe the complex problems of partner notification and underscore the ethical and political contexts within which policy decisions have been made.

Confidentiality↗

Tuberculosis notifications in Australia, 2000.

Australia has one of the lowest incidences of tuberculosis (TB) in the world. The annual incidence rate has remained stable at between 5 and 6 per 100,000 population, since 1991. In 2000, there were 1,060 TB notifications in Australia, of which 1,004 were newly diagnosed cases and 56 were relapse cases. The corresponding incidence rate for new and relapsed TB was 5.2 and 0.3 cases per 100,000 population, respectively. The highest incidence of TB disease in Australia continues to be among the overseas-born (18.0 per 100,000 population) and Indigenous Australians (15.3 per 100,000 population). By contrast, the incidence of disease in the non-indigenous Australian-born population remains low (1.2 per 100,000 population).

Adolescent↗

Medicaid program; Medicaid Management Information System (MMIS) performance review; notification procedures for changes in requirements, performance standards, and reapproval conditions--HCFA. Final rule.

This rule eliminates the requirement in the Medicaid regulations that HCFA meet certain Federal Register notification requirements for any changes in performance standards and other conditions for reapproval of State Medicaid Management Information Systems (MMISs), even if such Federal Register notice would not otherwise be required. An independent Federal Register publication requirement will remain in place with respect to changes in system requirements and other conditions for approval of MMISs. We believe that a revised process for notifying States and other concerned parties of changes in performance standards and other conditions of reapproval is appropriate and will facilitate the efficient issuance of revised MMIS review requirements and methodologies each year.

Centers for Medicare and Medicaid Services, U.S.↗

Medical devices; procedures for premarket notification, premarket approval, classification, performance standards establishment, banning devices, and availability of regulatory hearings--FDA. Final rule.

The Food and Drug Administration (FDA) is amending the medical device regulations governing procedures for premarket notification, premarket approval, classification, performance standards development, banning devices, and availability of regulatory hearings to conform these procedures to applicable provisions of the Safe Medical Devices Act of 1990 (the SMDA). Its publication promotes clarity and certainty to regulated industry and thus fosters economic growth by correcting the provisions in FDA's existing regulations to conform them to the now-governing statutory provisions.

Consumer Product Safety↗