A model for the European platform for rare disease registries.

abstract：BACKGROUND:Nutrigenetic tests are often considered to be less serious compared to other health-related genetic tests, although they share similar ethical concerns. Nutrigenetic tests are mainly available through direct-to-consumer genetic testing (DTC GT) and increasing in popularity. OBJECTIVE:To analyze the contents...

journal_title：Public health genomics

authors： De S,Pietilä AM,Iso-Touru T,Hopia A,Tahvonen R,Vähäkangas K

更新日期：2019-01-01 00:00:00

abstract：AIMS:The Public Health Genomics European Network (PHGEN) aimed, among other objectives, to identify the geographical variability and legal barriers of genomic medicine and public health genomics (PHG) at an international market, where the lack of policy coherence may limit its development in Europe. PHGEN supported the...

journal_title：Public health genomics

authors： Gutiérrez-Ibarluzea I,Ibarreta D,Malats N,Spanish National Task Force on Public Health Genomics.

更新日期：2012-01-01 00:00:00

abstract：:Public health genomics (PHG) is an area of public health that is vital if we are to ensure that scientific advances in genomics are effectively and responsibly translated into public and health policies. Education and training in PHG for relevant professionals in public health and wider health and public policy was th...

journal_title：Public health genomics

authors： Burton H,Adams M

更新日期：2009-01-01 00:00:00

abstract：:This paper examines emerging technologies and recent research on population differences in pharmacogenomics and the perspectives of scientists, community advocates, policymakers, and social critics on the use of race as a proxy for genetic variation. The discussion focuses on how recent developments in genomic science...

journal_title：Public health genomics

authors： Lee SS

更新日期：2009-01-01 00:00:00

abstract：AIMS:The objective was to evaluate children's opinions about their participation in a large research project. METHODS:Polish children between 6 and 14 years of age completed a questionnaire about their participation in the Polish Gabriel study (which aims to identify genetic and environmental causes of asthma). In tot...

journal_title：Public health genomics

authors： van der Pal S,Sozanska B,Madden D,Kosmeda A,Debinska A,Danielewicz H,Boznanski A,Detmar S

更新日期：2011-01-01 00:00:00

abstract：:Research assessing attitudes toward consent processes for high-throughput genomic-wide technologies and widespread sharing of data is limited. In order to develop a better understanding of stakeholder views toward these issues, this cross-sectional study assessed public and biorepository participant attitudes toward r...

journal_title：Public health genomics

authors： Lemke AA,Wolf WA,Hebert-Beirne J,Smith ME

更新日期：2010-01-01 00:00:00

abstract：BACKGROUND:Common obesity-associated genetic variants may exert their effects through increasing eating or decreasing metabolism. Such differences might influence individual responses to obesity genetic test results. METHODS:This was an experimental analogue study: 191 participants were asked to imagine they had recei...

journal_title：Public health genomics

authors： Sanderson SC,Persky S,Michie S

更新日期：2010-01-01 00:00:00

abstract：:Due to the lack of other treatment options, patient candidates for participation in phase I clinical trials are considered the most vulnerable, and many ethical concerns have emerged regarding the informed consent process used in the experimental design of such trials. Starting with these considerations, this nonsyste...

journal_title：Public health genomics

authors： Gorini A,Mazzocco K,Pravettoni G

更新日期：2015-01-01 00:00:00

abstract：BACKGROUND:Genetic testing has been gradually permeating the practice of medicine. Health-care providers may be confronted with new genetic approaches that require genetically informed decisions which will be influenced by patients' knowledge of genetics and their attitudes toward genetic testing. This study assesses t...

journal_title：Public health genomics

authors： Olwi D,Merdad L,Ramadan E

更新日期：2016-01-01 00:00:00

abstract：OBJECTIVE:To assess the cost effectiveness of newborn screening for congenital adrenal hyperplasia (CAH) in the U.S. newborn population. METHODS:We constructed a decision model to estimate the incremental cost-effectiveness ratio (ICER) of CAH screening compared to a strategy of no screening. Two types of cost effecti...

journal_title：Public health genomics

authors： Yoo BK,Grosse SD

更新日期：2009-01-01 00:00:00

abstract：BACKGROUND:Preconception carrier screening for hemoglobinopathies (HbPs) is debated in the Netherlands. OBJECTIVES:Intentions to participate in preconception carrier screening for HbPs as well as informed reproductive options were assessed in 109 Turkish female immigrants. METHOD:Participants completed a structured q...

journal_title：Public health genomics

authors： van Elderen T,Mutlu D,Karstanje J,Passchier J,Tibben A,Duivenvoorden HJ

更新日期：2010-01-01 00:00:00

abstract：BACKGROUND:Individuals with a family history of lung cancer have a two- to threefold increased risk for developing this disease. Family history information may be useful in lung cancer prevention and control approaches, but research is needed regarding how individuals interpret this information. This study examined ass...

journal_title：Public health genomics

authors： Chen LS,Kaphingst KA

更新日期：2011-01-01 00:00:00

abstract：:It is now recognized worldwide that anticipation and prevention of diseases have significant advantages for the health and healthy ageing of the population. Early recognition of the disease in a vulnerable population such as in children aged <5 years and adults aged >60 years enhances our preparedness for any eventual...

journal_title：Public health genomics

authors： Chakrabarty S,Kabekkodu SP,Brand A,Satyamoorthy K

更新日期：2016-01-01 00:00:00

abstract：BACKGROUND:Identification of low-income women with the rare but serious risk of hereditary cancer and their referral to appropriate services presents an important public health challenge. We report the results of formative research to reach thousands of women for efficient identification of those at high risk and exped...

journal_title：Public health genomics

authors： Joseph G,Kaplan C,Luce J,Lee R,Stewart S,Guerra C,Pasick R

更新日期：2012-01-01 00:00:00

abstract：BACKGROUND:The past 20 years have witnessed successive and exponential advances in genomic discovery and technology, with a broad scientific imperative pushing for continual advancements. The most consistent critique of these advances is that they have vastly outpaced translation of new knowledge into improvements in p...

journal_title：Public health genomics

authors： McBride CM,Abrams LR,Koehly LM

更新日期：2015-01-01 00:00:00

abstract：BACKGROUND:Diabetes is one of the most common metabolic diseases in humans that cause disruption in glucose and fat metabolism. The determination of the ABO blood group system is hereditary and both diabetes and blood groups have a genetic basis. OBJECTIVES:The aim of this study was to investigate the odds of type 2 d...

journal_title：Public health genomics

authors： Navabi J,Navabi SM,Hemmati N,Shaahmadi Z,Aghaei A

更新日期：2020-01-01 00:00:00

abstract：BACKGROUND:The nationwide use of the 21-gene recurrence score (21-RS) and implications regarding chemotherapy administration in relation to clinical risk in early breast cancer patients are investigated. METHODS:Breast cancer patients surgically treated between 2014 and 2016 were selected from the Netherlands Cancer R...

journal_title：Public health genomics

authors： Schreuder K,Kuijer A,Bentum S,van Dalen T,Siesling S

更新日期：2018-01-01 00:00:00

abstract：BACKGROUND:Stakeholders who are committed to bridge the gap in genetics services need to be aware of current initiatives in sub-Saharan Africa. METHODS:We reviewed selected experiences from African geneticists that led to specific recommendations. RESULTS:The initiation of prenatal diagnosis of sickle cell anaemia fo...

journal_title：Public health genomics

authors： Wonkam A,Muna W,Ramesar R,Rotimi CN,Newport MJ

更新日期：2010-01-01 00:00:00

abstract：:Approximately 20% of all cancers are associated with infectious agents. Among them, human papillomaviruses (HPVs) are very common and are now recognized as the etiological agent of cervical cancer, the second most common cancer in women worldwide, and they are increasingly linked with other forms of dysplasia. Carcino...

journal_title：Public health genomics

authors： Lehoux M,D'Abramo CM,Archambault J

更新日期：2009-01-01 00:00:00

abstract：:The purpose of the study was to gain new insights into innovation systems by comparing state-of-the-art of existing approaches of innovation creation and innovation management in healthcare and ICT. It is unique, in that it compares countries in Africa with countries in Europe in order to identify similarities and dif...

journal_title：Public health genomics

authors： Schee Genannt Halfmann S,Evangelatos N,Kweyu E,DeVilliers C,Steinhausen K,van der Merwe A,Brand A

更新日期：2018-01-01 00:00:00

abstract：BACKGROUND:Much of the research examining psychosocial aspects of genetic testing has used hypothetical scenarios, based on the largely untested assumption that hypothetical genetic testing intentions are good proxies for behavior. We tested whether hypothetical interest predicts uptake of genetic testing and whether f...

journal_title：Public health genomics

authors： Sanderson SC,O'Neill SC,Bastian LA,Bepler G,McBride CM

更新日期：2010-01-01 00:00:00

abstract：:Genome-wide association studies and biobanks are at the forefront of genomics research and possess unprecedented potential to improve public health. However, for public health genomics to ultimately fulfill its potential, technological and scientific advances alone are insufficient. Scientists, ethicists, policy maker...

journal_title：Public health genomics

authors： Pang T

更新日期：2013-01-01 00:00:00

abstract：BACKGROUND:Disease outbreak investigation is a key aspect of public health. Whole-genome sequencing of bacterial pathogen based on new generation high-throughput sequencing technologies has facilitated outbreak investigations recently. Whilst the approach has become more affordable and accessible to research and clinic...

journal_title：Public health genomics

authors： Cheung MK,Kwan HS

更新日期：2012-01-01 00:00:00

abstract：BACKGROUND:Although thalassemia is a genetic hemoglobinopathy in Malaysia, there is limited data on thalassemia mutations in the indigenous groups. This study aims to identify the types of globin gene mutations in transfusion-dependent patients in Northern Sarawak. METHODS:Blood was collected from 32 patients from the...

journal_title：Public health genomics

authors： Tan JA,Chin SS,Ong GB,Mohamed Unni MN,Soosay AE,Gudum HR,Kho SL,Chua KH,Chen JJ,George E

更新日期：2015-01-01 00:00:00

abstract：:While personalised cancer medicine holds great promise, targeting therapies to the biological characteristics of patients is limited by the number of validated biomarkers currently available. The implementation of biomarkers has undergone many challenges with few biomarkers reaching cancer patients in the clinic. Ther...

journal_title：Public health genomics

authors： Schneider D,Bianchini G,Horgan D,Michiels S,Witjes W,Hills R,Plun-Favreau J,Brand A,Lawler M,EAPM Working Group for Oncology Clinical Research.

更新日期：2015-01-01 00:00:00

abstract：BACKGROUND/AIMS:To describe the interests, decision making, and responses of consumers of direct-to-consumer personal genomic testing (DTC-PGT) services. METHODS:Prior to 2013 regulatory restrictions on DTC-PGT services, 1,648 consumers from 2 leading companies completed Web surveys before and after receiving test res...

journal_title：Public health genomics

authors： Roberts JS,Gornick MC,Carere DA,Uhlmann WR,Ruffin MT,Green RC

更新日期：2017-01-01 00:00:00

abstract：BACKGROUND:Intellectual disability (ID), characterized by impairments in intellectual function and adaptive behavior, affects 1-3% of the population. Many studies investigated its etiology, but few are cohort studies in middle-income countries. AIMS:To estimate prevalence, etiology, and factors related to ID among chi...

journal_title：Public health genomics

authors： Karam SM,Barros AJ,Matijasevich A,Dos Santos IS,Anselmi L,Barros F,Leistner-Segal S,Félix TM,Riegel M,Maluf SW,Giugliani R,Black MM

更新日期：2016-01-01 00:00:00

abstract：PURPOSE:Returning genetic results to research participants is gaining momentum in the USA. It is believed to be an important step in exploring the impact of efforts to translate findings from research to bedside and public health benefits. Some also hope that this practice will incentivize research participation, espec...

journal_title：Public health genomics

authors： Sabatello M,Zhang Y,Chen Y,Appelbaum PS

更新日期：2020-01-01 00:00:00

abstract：BACKGROUND:Post kala-azar dermal leishmaniasis (PKDL) is a cutaneous form of disease that develops at variable times after individuals have received treatment for clinical visceral leishmaniasis (VL). The study aimed to investigate the possible role of interleukin 10 (IL-10) and development of PKDL. METHODS:77 familie...

journal_title：Public health genomics

authors： Farouk S,Salih MA,Musa AM,Blackwell JM,Miller EN,Khalil EA,Elhassan AM,Ibrahim ME,Mohamed HS

更新日期：2010-01-01 00:00:00

abstract：BACKGROUND:New genetic associations with obesity are rapidly being discovered. People's causal beliefs about obesity may influence their obesity-related behaviors. Little is known about genetic compared to lifestyle causal beliefs regarding obesity, and obesity-related diseases, among minority populations. This study e...

journal_title：Public health genomics

authors： Sanderson SC,Diefenbach MA,Streicher SA,Jabs EW,Smirnoff M,Horowitz CR,Zinberg R,Clesca C,Richardson LD

更新日期：2013-01-01 00:00:00