The XLH Matters 2024 GCC Edition meeting convened 51 physicians from 6 Gulf countries to discuss the diagnosis and management of patients with X-linked hypophosphatemia (XLH). This was the first XLH Matters meeting held in the Gulf Cooperation Council (GCC) region, reflecting the unique healthcare structure, cultural context, and patient needs. The key themes of the meeting included: challenges faced by GCC clinicians in diagnosing and treating XLH, the importance of multi-disciplinary care, the psychosocial impact, and the principles of effective transition of patients from pediatric to adult care. Participants emphasized the importance of raising awareness of XLH among primary care physicians, pediatricians, and dentists to facilitate early diagnosis in the region. Genetic testing was highlighted as the key tool supporting diagnosis, but wider access to this is needed across the GCC. A structural, progressive, and personalized model for pediatric-to-adult transition was proposed, based on the individual needs of the patient and including patient empowerment and continuity of care. The meeting underscored the need for regional collaboration, awareness initiatives, and implementation of recent clinical guidelines to improve outcomes for people with XLH in the GCC region.

Background: Cancer is a leading cause of morbidity and mortality in the Gulf Cooperation Council (GCC) countries. This study aims to provide cancer incidence and mortality estimates in 2020 in the GCC countries alongside future projections for 2040 to shape cancer control policy in the region. Methods: The estimated numbers of new cancer cases and deaths were extracted from the GLOBOCAN database developed by the International Agency for Research on Cancer; new cancer cases, cancer deaths, and corresponding age-standardized incidence and mortality rates for the year 2020 are presented. Results: An estimated 42,475 new cancer cases and 19,895 deaths occurred in the GCC countries in 2020, with corresponding age-standardized incidence and mortality rates of 96.5 and 52.3 per 100,000, respectively. Female breast (16%), colorectal (13%), and thyroid (9%) were the most common types of cancer in the GCC countries, accounting for almost 40% of all cancer incidence. Colorectal (14%) followed by breast cancer (9%) were the leading causes of cancer death, though the magnitude of rates of the major cancer types varied substantially across the GCC countries. Even if we assume rates in the region will remain unchanged over the next two decades, the cancer burden in the GCC will increase by 116% (Saudi Arabia) to 270% (Qatar), reaching nearly 104,000 cancer cases by the year 2040. Conclusion: The sharp increase in the estimated cancer incidence and mortality predicted over the next decades in the region requires workforce and financial planning for the healthcare systems in the constituent countries, alongside broader strengthening of national cancer prevention and control efforts.

Background: Age and ethnicity are important factors in breast cancer (BC) disparities and outcome. However, studies examining both racial and age-related disparities are scarce. We sought to determine differences in epidemiological and clinicopathological characteristics of breast cancer between races in age-specific cohorts. Methods: Gulf Centre for Cancer Registration database and King Faisal Specialist Hospital and Research Center BC registry database for Saudi/Arab women (n=4,206) and Cancer Incidence in Five Continents Volume XI reports, and Surveillance, Epidemiology, and End Results for African-American and non-Hispanic White women with BC were used. Results: Early onset BC (age < 50 years) was more prevalent among Arab women (63%) compared with African-American women (29%) and White-American women (21%). Young Arab and African-American women had more estrogen/progesterone receptor negativity than young White-American women. The triple negative and (HER2)+/(HR)– BC subtypes were more prevalent among young Arab women compared to African-American and White women. The Arab women had the worst prognosis, especially among young women cohort. The differences persisted even after stratification to aggressive BC subtypes. The age-standardized incidence rate was significantly higher in developed countries than in Arab countries within the elderly-women cohort, but was comparable in the young women cohort. Conclusions: While young Arab and Black women had significantly higher frequency of hormonal negativity than White women, Arab women showed significantly higher prevalence of HER2+/HR- and TNBC subtypes than Black and White women. The racial/ethnic differences were more pronounced in the young women cohort. Citation Format: Dilek Colak, Olfat Al-Harazi, Hala Khalil, Maha M. Aleid, Amal N. Almadouj, Sukina Qanbar, Dahish S. Ajarim, Ibrahim H. Kaya, Ali S. Al-Zahrani. Racial and ethnic differences in breast cancer incidence, clinicopathological features and survival by age and breast cancer subtypes [abstract]. In: Proceedings of the 15th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2022 Sep 16-19; Philadelphia, PA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2022;31(1 Suppl):Abstract nr C114.

BACKGROUND:Population-based cancer survival is a key metric for the assessment of cancer control strategies. Accurate estimation of cancer survival requires complete follow-up data for all patients.AIM:To explore the impact of linking national cancer registry data to the national death index on net survival estimates for women diagnosed with cervical cancer in Saudi Arabia during 2005-2016.METHODS:We acquired data on 1,250 Saudi women diagnosed with invasive cervical cancer during the 12- year period 2005-2016 from the Saudi Cancer Registry. These included the woman's last known vital status and the date of last known vital status, but this was restricted to information from clinical records and death certificates that mention cancer as a cause of death ("registry follow-up"). We submitted available national ID numbers to the National Information Center (NIC) of the Ministry of Interior, to ascertain the date of death, from any cause of death, for women who had died up until 31 December 2018 ("NIC follow-up"). We estimated age-standardised 5-year net survival using the Pohar-Perme estimator under five different scenarios using the two sources of follow-up, and censoring at the date of last contact with the registry versus extending survival until the closing date if no information on death was obtained.RESULTS:1,219 women were eligible for survival analysis. Five-year net survival was lowest when using NIC followup only (56.8%; 95%CI 53.5 - 60.1%), and highest when registry follow-up only was used and survival time was extended until closure date for those with no information on death (81.8%; 95%CI 79.6 - 84%).CONCLUSION:Reliance solely on information from deaths certified as due to cancer and clinical records leads to a high proportion of missing deaths in the national cancer registry. This is probably due to low quality of certification of the cause of death in Saudi Arabia. Linkage of the national cancer registry to the national death index at the NIC identifies virtually all deaths, providing more reliable survival estimates, and it eliminates the ambiguity in determining the underlying cause of death. Therefore, this should become the standard approach to estimating cancer survival in Saudi Arabia.

Cancer is a growing global health-care problem, especially in under-resourced countries. Cancer prevalence in Gulf Cooperation Council (GCC) countries is projected to increase, potentially leading to a major burden on the economy. Policy makers in GCC countries have invested in the development of National Cancer Control Strategies to address the current and future burden of cancer through different initiatives and policies for prevention, early detection, and management of cancer. These strategies include capacity building, health education, and global partnerships to strengthen health-care systems. The aim of this Review is to highlight the status of cancer control programmes in GCC countries, describe what has been achieved to date, and identify the gaps, with recommendations on how to lower the burden of cancer in the Gulf region in the future.

Background: Regional differences in cervical cancer survival have been reported in several countries. They may result from disparities in access to early diagnostic services, timely referral or appropriate treatment. Estimates of survival by stage at diagnosis could help to distinguish whether lower-than-expected survival is due to late-stage diagnosis or sub-optimal management, and to inform health-policy makers for resource allocation. In this retrospective cohort study, we aim to provide a detailed and up-to-date analysis of cervical cancer survival in Saudi Arabia by stage and region, and to explore whether any differences in survival between regions are due to differences in stage at diagnosis. Methods: Data on all women diagnosed with invasive cervical cancer during 2005–2016 were obtained from the Saudi Cancer Registry (SCR). Vital status and date of death if dead were ascertained by linking the registry records to vital registration data in the National Information Centre (NIC) of the Ministry of Interior. Women for whom no death record existed on the day of record linkage were considered to be alive. We estimated age-standardised five-year net survival using the Pohar-Perme estimator for women diagnosed during 2005–2010 and 2011–2016. Survival was also estimated by region and stage at diagnosis, and by region stratified by stage. Results: Age-standardised 5-year net survival did not change in Saudi Arabia between 2005–2010 [59.2%; 95% confidence interval (CI) 52.7–65.7%] and 2011–2016 (59.7%; 54.7–64.6%), or in any of the regions, except Makkah, where there was a 19% increase in survival for women diagnosed during 2011–2016 compared to 2005–2010. Survival for women diagnosed at a distant stage was substantially lower in the Eastern Region than in other regions. Conclusions: Cervical cancer survival has remained largely unchanged. Higher survival could be achieved by improving early diagnosis and access to high-quality treatment.

Population-based cancer registries are crucial for our understanding of cancer burden and to inform cancer policy. They provide data on cancer incidence in a country or region, which aid the setting of priorities for cancer control, the monitoring and evaluation of preventive interventions, and the prediction of the future burden of cancer. When information on vital status is available, registry data allow for the estimation of population-based cancer survival, which helps researchers evaluate progress in cancer control, including early diagnosis, prompt referral, and adequate treatment. Routinely collected variables such as age, sex, stage, geographical location, and treatment can help to answer a multitude of questions about the distribution of risk factors, success of early detection efforts, and disparities in cancer survival. 1 Piñeros M Znaor A Mery L Bray F A global cancer surveillance framework within noncommunicable disease surveillance: making the case for population-based cancer registries. Epidemiol Rev. 2017; 39: 161-169 Crossref PubMed Scopus (63) Google Scholar

BACKGROUND:Liver cancer has been identified as the fifth most common cancer in males and ninth in females in the Gulf Cooperation Council (GCC) States. Taking into consideration that GCC states have comparable cultural and demographic backgrounds, this study aimed to examine the trends and patterns of liver cancer cases in the GCC states and to compare these with other regions.MATERIALS AND METHODS:The data were obtained from the Gulf Centre for Cancer Control and Prevention, which has maintained its database for GCC states since 1998. In total, 8,012 primary liver cancer cases were recorded for 15 years, from 1998 to 2012. Demographic information and cancer data for all cases were reviewed and analyzed, including sex, age, nationality, histological type and staging. Trends in the frequency of cases, agespecific incidence and stage at diagnosis were presented and compared for three periods (1998-2002, 2003-2007 and 2008-2012) for the six GCC countries.RESULTS:The trends show a balanced decrease in the number of liver cancer cases between 1998 and 2012. Over one-third of patients who presented were diagnosed with advanced liver cancer; however, 45.4% of the cases were left unknown.CONCLUSION:While the Gulf countries have achieved some success in reducing the number of liver cancer cases, there is a clear defect in the documentation of the cancer staging in some countries, and more effort is needed to improve early diagnosis.

Cancer is a major contributing cause of morbidity and mortality in the Eastern Mediterranean region. The aim of the current study was to estimate the cancer burden attributable to major lifestyle and environmental risk factors. We used age-, sex- and site-specific incidence estimates for 2012 from IARC's GLOBOCAN, and assessed the following risk factors: smoking, alcohol, high body mass index, insufficient physical activity, diet, suboptimal breastfeeding, infections and air pollution. The prevalence of exposure to these risk factors came from different sources including peer-reviewed international literature, the World Health Organization, noncommunicable disease Risk Factor Collaboration, and the Food and Agriculture Organization. Sex-specific population-attributable fraction was estimated in the 22 countries of the Eastern Mediterranean region based on the prevalence of the selected risk factors and the relative risks obtained from meta-analyses. We estimated that approximately 33% (or 165,000 cases) of all new cancer cases in adults aged 30 years and older in 2012 were attributable to all selected risk factors combined. Infections and smoking accounted for more than half of the total attributable cases among men, while insufficient physical activity and exposure to infections accounted for more than two-thirds of the total attributable cases among women. A reduction in exposure to major lifestyle and environmental risk factors could prevent a substantial number of cancer cases in the Eastern Mediterranean. Population-based programs preventing infections and smoking (particularly among men) and promoting physical activity (particularly among women) in the population are needed to effectively decrease the regional cancer burden.

About 83% of laboratory-confirmed Middle East respiratory syndrome coronavirus (MERS-CoV) cases have emerged from Saudi Arabia, which has the highest overall mortality rate worldwide. This retrospective study assesses the impact of spatial/patient characteristics for 14-and 45-day MERS-CoV mortality using 2012–2019 data reported across Saudi regions and provinces. The Kaplan–Meier estimator was employed to estimate MERS-CoV survival rates, Cox proportional-hazards (CPH) models were applied to estimate hazard ratios (HRs) for 14-and 45-day mortality predictors, and univariate local spatial autocorrelation and multivariate spatial clustering analyses were used to assess the spatial correlation. The 14-day, 45-day and overall mortality rates (with estimated survival rates) were 25.52% (70.20%), 32.35% (57.70%) and 37.30% (56.50%), respectively, with no significant rate variations between Saudi regions and provinces. Nationally, the CPH multivariate model identified that being elderly (age ≥ 61), being a non-healthcare worker (non-HCW), and having an underlying comorbidity were significantly related to 14-day mortality (HR = 2.10, 10.12 and 4.11, respectively; p < 0.0001). The 45-day mortality model identified similar risk factors but with an additional factor: patients aged 41–60 (HR = 1.44; p < 0.0001). Risk factors similar to those in the national model were observed in the Central, East and West regions and Riyadh, Makkah, Eastern, Madinah and Qassim provinces but with varying HRs. Spatial clusters of MERS-CoV mortality in the provinces were identified based on the risk factors (r2 = 0.85–0.97): Riyadh (Cluster 1), Eastern, Makkah and Qassim (Cluster 2), and other provinces in the north and south of the country (Cluster 3). The estimated HRs for the 14-and 45-day mortality varied spatially by province. For 45-day mortality, the highest HRs were found in Makkah (age ≥ 61 and non-HCWs), Riyadh (comorbidity) and Madinah (age 41–60). Coming from Makkah (HR = 1.30 and 1.27) or Qassim province (HR = 1.77 and 1.70) was independently related to higher 14-and 45-day mortality, respectively. MERS-CoV patient survival could be improved by implementing appropriate interventions for the elderly, those with comorbidities and non-HCW patients.

INTRODUCTION:Thyroid cancer is a predominant malignancy in the Gulf Cooperation Council (GCC) states. Explicit regional assessments of incidence are crucial among countries that share similar demographic, cultural, and economic characteristics. This study provides an assessment of trends in thyroid cancer in the GCC over fifteen years.METHODS:Data included cases in the GCC, reported to the Gulf Center for Cancer Registration during 1998-2012 (N=10,417). Age-specific rates, age-standardized rates (ASR), and stage at diagnosis are compared between the GCC states during 1998-2002, 2003-2007, and 2008-2012. Standardization of rates was performed using the World Standard Population.RESULTS:Between 1998-2002 and 2008-2012, the frequency of thyroid cancer in the GCC was approximately fourfold higher in females than males. The average ASR increased from 1.8 to 2.4/100,000 for males and 5.7 to 8.4/100,000 for females. Age-specific incidence showed a shift towards a younger age for women and an older age for males. During 1998-2012, the proportion of localized stage at diagnosis ranged from 18% in Oman to 57% in the UAE. The proportion of unknown stage varied considerably among states, ranging from 13% to 64%. Over the study period, the proportion of unknown stage increased in all but two states (Bahrain and Saudi Arabia).CONCLUSION:The incidence of thyroid cancer in the GCC has generally increased. This could reflect improved testing, leading to enhanced detection and diagnosis of thyroid cancers, as well as a possible increase in exposure to risk factors. Improved ascertainment of stage data is essential to reflect changes in early diagnosis activities.

Background: Many countries in the Eastern Mediterranean region (EMR) are undergoing marked demographic and socioeconomic transitions that are increasing the cancer burden in region. We sought to examine the national cancer incidence and mortality profiles as a support to regional cancer control planning in the EMR.Methods: GLOBOCAN 2012 data were used to estimate cancer incidence and mortality by country, cancer type, sex and age in 22 EMR countries. We calculated age- standardized incidence and mortality rates (per 100,000) using direct method of standardization.Results: The cancer incidence and mortality rates vary considerably between countries in the EMR. Incidence rates were highest in Lebanon (204 and 193 per 100,000 in males and females, respectively). Mortality rates were highest in Lebanon (119) and Egypt (121) among males and in Somalia (117) among females. The profile of common cancers differs substantially by sex. For females, breast cancer is the most common cancer in all 22 countries, followed by cervical cancer, which ranks high only in the lower-income countries in the region. For males, lung, prostate, and colorectal cancer in combination represent almost 30% of the cancer burden in countries that have attained very high levels of human development.Conclusions: The most common cancers are largely amenable to preventive strategies by primary and/or secondary prevention, hence a need for effective interventions tackling lifestyle risk factors and infections. The high mortality observed from breast and cervical cancer highlights the need to break the stigmas and improve awareness surrounding these cancers. (C) 2017 Published by Elsevier Ltd.

Inherited platelet disorders (IPDs) are a heterogeneous group of diseases affecting platelet production and function with variable clinical severity. The prevalence is estimated to be less than 1:1000,000 worldwide in most common types. There are no population based epidemiological studies in Arab ethnicity to estimate the prevalence of IPD.

Cancer is a major health problem in both high income and middle-to-low income countries, and is the second leading cause of death in the world. Although more than a third of cancer could be prevented and another third could be cured if diagnosed early, it remains a huge challenge to health-care systems worldwide. Despite substantial improvements in health services some of the countries in the Gulf region, the burden of non-communicable diseases is a major threat, primarily due to the rapid socioeconomic shifts that have led to unfavourable changes in lifestyle such as increased tobacco use, decreased physical activity, and consumption of unhealthy food. In the Gulf Cooperation Council states (United Arab Emirates, Bahrain, Saudi Arabia, Oman, Qatar, and Kuwait), advanced breast cancer, colorectal cancer, leukaemia, thyroid cancer, and non-Hodgkin lymphomas are the most common cancers affecting younger populations compared with other countries. By contrast with cancer prevalence in developed countries, prostate, lung, and cervical cancers are not among the most common cancers in the Gulf region. In view of the increased cost of cancer management worldwide, integrated approaches between primary, secondary, and tertiary health-care systems with special focus on prevention and early detection is an essential step in the countries' efforts in the fight against cancer.