Publications by authors named "Mary Nguyen-Nielsen"

Purpose: This study compares the side effects of active surveillance, prostatectomy, radiation with or without adjuvant endocrine therapy, watchful waiting, and palliative therapy on patient-reported outcomes in a nationwide, population-based cohort of Danish men with prostate cancer.

Methods: A total of 15,465 participants completed questionnaires over a 5 year period (2011-2016). Condition-specific quality of life, focusing on urinary function, bowel incontinence, sexual function, and hormonal symptoms were investigated using the validated EPIC-26 questionnaire at diagnosis, 1 year- and 3- year follow-up.

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Background: Current knowledge of the validity of registry data on prostate cancer-specific death is limited. We aimed to determine the underlying cause of death among Danish men with prostate cancer, to estimate the level of misattribution of prostate cancer death, and to examine the risk of death from prostate cancer when accounting for competing risk of death.

Material And Methods: We investigated a nationwide cohort of 15,878 prostate cancer patients diagnosed in 2010-2014; with 3343 deaths occurring through 2016.

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Aim Of Database: The Danish Prostate Cancer Database (DAPROCA) is a nationwide clinical cancer database that has prospectively collected data on patients with incident prostate cancer in Denmark since February 2010. The overall aim of the DAPROCA is to improve the quality of prostate cancer care in Denmark by systematically collecting key clinical variables for the purposes of health care monitoring, quality improvement, and research.

Study Population: All Danish patients with histologically verified prostate cancer are included in the DAPROCA.

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Prostate cancer (PC) is a major disease that affects men's health worldwide. It is the second most common form of cancer in men, surpassed only by nonmelanoma skin cancers such as basal and squamous cell carcinomas. Diagnostic strategies with population screening for prostate cancer using prostate-specific antigen (PSA) has been surrounded with controversy and debated intensively ever since the PSA protein was first purified in 1979 by Wang et al.

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Background: Ovarian cancer has a high mortality rate, especially in Denmark where mortality rates have been reported higher than in adjacent countries with similar demographics. This study therefore examined recent survival and mortality among Danish ovarian cancer patients over an 18-year study period.

Methods: This nationwide registry-based observational study used data from the Danish Gynecology Cancer Database, Danish Pathology Registry, and Danish National Patient Registry.

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Background: Few data exist on the occurrence of metastatic basal cell carcinoma (mBCC).

Objective: To identify all cases of mBCC in Denmark over a 14-year period.

Methods: We searched the Danish National Patient Registry covering all Danish hospitals, the Danish Cancer Registry, the National Pathology Registry and the Causes of Death Registry during the period 1997 to 2010 for potential cases of mBCC registered according to the International classification of diseases ICD-10 and the International Systemized Nomenclature of Medicine (SNOMED).

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Background: Few studies have examined the risk of developing castration-resistant prostate cancer (CRPC), metastasis, and mortality among nonmetastatic prostate cancer (M0-PC) patients treated with androgen deprivation therapy (ADT). We estimated the incidence of these outcomes among M0-PC patients on ADT and identified prostate-specific antigen (PSA) based biomarkers for mortality and metastasis.

Methods: This population-based cohort study included all nonmetastatic prostate cancer patients in Northern and Central Denmark Regions during 1997-2010, identified through registry data.

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Objective: Among patients with prostate cancer, diagnostic codes for bone metastases in the Danish National Registry of Patients have a sensitivity of 44%. In an attempt to improve the sensitivity of registry-based identification of metastases from prostate cancer, we tested a series of algorithms, combining elevated prostate-specific antigen (PSA) levels, use of antiresorptive therapy, and performed bone scintigraphy.

Patients And Methods: We randomly selected 212 men diagnosed with prostate cancer in 2005-2010 in the Central Denmark Region with prespecified PSA values, antiresorptive therapy, and bone scintigraphy who did not have a registry-based diagnostic code indicating presence of distant metastases.

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Background And Aim: It is well established that cancer patients have an increased risk of venous thromboembolism (VTE). However, no previous study has examined the quality of VTE diagnoses related to cancer patients in the Danish National Registry of Patients (DNRP). To support future studies on cancer and risk of VTE, this study aimed to estimate the positive predictive value (PPV) of VTE diagnoses among prostate cancer (PC) patients registered in the DNRP.

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Objective: We investigated temporal changes in overall survival among prostate cancer (PC) patients and the impact of comorbidity on all-cause mortality.

Methods: We conducted a population-based cohort study in the Central Denmark Region (1.2 million inhabitants).

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Denmark has an extensive collection of national and regional medical registries. There are many advantages to registry-based research when investigating genetic diseases which, due to their rarity, can be difficult to identify. In this study, we aimed to provide an updated overview of Danish registries for medical genetic conditions and describe how data linkage across registries can be used to collect data on genetic diseases at the individual level and at the family level.

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Unlabelled: X-linked hypohidrotic ectodermal dysplasia (XLHED) is characterised by hypohidrosis, sparse hair, and teeth abnormalities. Infants with XLHED have an increased risk of death by hyperpyrexia. XLHED is the most common form of hypohidrotic ectodermal dysplasia (HED); however, no population-based prevalence estimates are available.

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Objective: To investigate the completeness of TNM (Tumor-Node-Metastasis) staging for prostate cancer (PC) in the Danish Cancer Registry (DCR).

Methods: We identified 20,184 men registered with first-time PC in the DCR between 2004 and 2009. These patients were linked to the Danish National Patient Register to obtain data on comorbidity according to the Charlson Comorbidity Index (CCI).

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