Oral cancer in Libya and development of regional oral cancer registries: A review

AbstractThe aims of this paper are three-fold: (1) to summarize the current epidemiological data on oral cancer in Libya as reported in the published literature and as compared to other national oral cancer rates in the region; (2) to present both the history of the early development, and future goals, of population-based oral cancer tumor registries in Libya as they partner with the more established regional and international population-based cancer tumor registries; and, (3) to offer recommendations that will likely be required in the near future if these nascent, population-based Libyan oral cancer registries are to establish themselves as on-going registries for describing the oral cancer disease patterns and risk factors in Libya as well as for prevention and treatment. This comprehensive literature review revealed that the current baseline incidence of oral cancer in Libya is similar to those of other North Africa countries and China, but is relatively low compared to the United Kingdom, the United States, and India. The recently established Libyan National Cancer Registry Program, initiated in 2007, while envisioning five cooperating regional cancer registries, continues to operate at a relatively suboptimal level. Lack of adequate levels of national funding continue to plague its development…and the accompanying quality of service that could be provided to the Libyan people

An assessment of the quality of the I-DSD and the I-CAH registries - international registries for rare conditions affecting sex development

With the proliferation of rare disease registries, there is a need for registries to undergo an assessment of their quality against agreed standards to ensure their long-term sustainability and acceptability.This study was performed to evaluate the I-DSD and I-CAH Registries and identify their strengths and weaknesses. The design and operational aspects of the registries were evaluated against published quality indicators. Additional criteria included the level of activity, international acceptability of the registries and their use for research. The design of the I-DSD and I-CAH Registries provides them with the ability to perform multiple studies and meet the standards for data elements, data sources and eligibility criteria. The registries follow the standards for data security, governance, ethical and legal issues, sustainability and communication of activities. The data have a high degree of validity, consistency and accuracy and the completeness is maximal for specific conditions such as androgen insensitivity syndrome and congenital adrenal hyperplasia. In terms of research output, the external validity is strong but the wide variety of cases needs further review. The internal validity of data was condition specific and highest for conditions such as congenital adrenal hyperplasia. The shift of the registry from a European registry to an international registry and the creation of a discrete but linked CAH registry increased the number of users and stakeholders as well as the international acceptability of both registries. The I-DSD and I-CAH registries comply with the standards set by expert organisations. Recent modifications in their operation have allowed the registries to increase their user acceptability

The experience of accommodating privacy restrictions during implementation of a large-scale surveillance study of an osteoporosis medication.

PurposeTo explore whether privacy restrictions developed to protect patients have complicated research within a 15-year surveillance study conducted with US cancer registries.MethodsData from enrolling 27 cancer registries over a 10-year period were examined to describe the amount of time needed to obtain study approval. We also analyzed the proportion of patients that completed a research interview out of the total reported by the registries and examined factors thought to influence this measure.ResultsThe average length of the research review process from submission to approval of the research was 7 months (range, <1 to 24 months), and it took 6 months or more to obtain approval of the research at 41% of the cancer registries. Most registries (78%) required additional permission steps to gain access to patients for research. After adjustment for covariates, the interview response proportion was 110% greater (ratio of response proportion = 2.1; 95% confidence interval: 1.3, 3.3) when the least restrictive versus the most restrictive permission steps were required. An interview was more often completed for patients (or proxies) if patients were alive, within a year of being diagnosed, or identified earlier in the study.ConclusionsLengthy research review processes increased the time between diagnosis and provision of patient information to the researcher. Requiring physician permission for access to patients was associated with lower subject participation. A single national point of entry for use of cancer registry data in health research is worthy of consideration to make the research approval process efficient. © 2016 The Authors. Pharmacoepidemiology and Drug Safety published by John Wiley & Sons Ltd

Demographic differences and annual trends in childhood and adolescent cancer incidence and mortality in Michigan during the period 1999-2012

Background. Michigan has declining economic conditions and factories that release pollutants. During the period 1999-2012, only 10 out of 50 states had an overall cancer incidence rate that was higher than that in Michigan. It is not known how children’s cancer rates in Michigan vary by age, gender, race/ethnicity, and year as well as how these rates compare to those in the U.S. Method: The Center for Disease Control and Prevention WONDER database obtained cancer incidence and mortality data from cancer registries and death certificates. We compared age-adjusted incidence and mortality cancer rates by gender, race/ethnicity, and year for children and adolescents aged 0 to 19 years in Michigan and the U.S. for the period 1999-2012. Results. Males in Michigan had higher incidence rates of cancer than females in both Michigan and the U.S. Non-Hispanic Whites had higher cancer incidence rates than people of all other races/ethnicities in Michigan. The childhood cancer incidence rates increased for all racial/ethnic groups except for Hispanic Whites in Michigan during the period 1999-2012. Incidence rates increased more so in Michigan compared to the U.S. for some racial/ethnic groups such as non-Hispanic Whites during the period 1999-2012. Hispanic Whites in all age categories had higher cancer mortality rates than people of all other races/ethnicities in Michigan. Mortality rates for both males and females exhibited a downward trend from 1999 to 2002 in both Michigan and the U.S. Conclusions. Males, non-Hispanic Whites, and Hispanic Whites tended to be disproportionately affected by cancer in Michigan. Future research should investigate the relationship of genetic determinants, socio-economic factors, prenatal behaviors, and air pollution with cancer rates among racial/ethnic groups in Michigan

[Prognosis of colorectal cancer and socio-economic inequalities].

It is well established that socio-economic status is a major prognostic factor for many cancers, including colorectal cancer. The aims of this review are (i) to report epidemiological data showing how socio-economic status influences colorectal cancer survival, (ii) to attempt to describe the mechanisms underlying these survival inequalities, and (iii) to assess their impact on survival of colorectal cancer

Cancer incidence in Golestan province: Report of an ongoing population-based cancer registry in Iran between 2004 and 2008

Background: Golestan Province, at the western end of the Asian esophageal cancer (EC) belt in northeastern Iran, was reported to have one of the highest worldwide rates of EC in the 1970s. We have previously shown a declining incidence of EC in Golestan during the last decades. This study reports additional new results from the Golestan Population-based Cancer Registry (GPCR). Methods: The GPCR collected data from newly diagnosed (incident) cancer cases from all 68 public and private diagnostic and therapeutic centers in Golestan Province. CanReg-4 software was used for data entry and analysis based on the guidelines of the International Agency for Research on Cancer (IARC). Age-standardized incidence rates (ASR) of cancers were calculated using the 2000 world standard population. Results: From 2004 through 2008, 9007 new cancer cases were reported to the GPCR. The mean (SD) age was 55.5 (18.6) years, and 54 were diagnosed in men. The ASRs of all cancers were 175.3 and 141.1 per 100,000 person-years for males and females, respectively. Cancers of the stomach (ASR:30.7), esophagus (24.3), and lung (15.4) were the most common cancers in males. In females, breast cancer (ASR:26.9) was followed by malignancies of the esophagus (19.1) and stomach (12.4). The diagnosis of cancer was based on histopatho- logical reports in 71 and on death certificate only in 9 ofcases. Conclusions: The EC incidence rate continues to decline in Golestan, while the incidence rates of stomach, colorectal, and breast cancers continue to increase