ABSTRACTPart of Ontario's strategy on Alzheimer's disease and related dementias (ADRD) was to develop research priorities and recommend strategies for building research capacity. The process to achieve these objectives included an environmental scan, key informant interviews, surveys, and a consensus workshop; this process involved over 100 researchers, clinicians, persons with ...

This study utilized a community-based, participatory research model between the Association for Frontotemporal Degeneration (AFTD) and the Education Core of the Indiana Alzheimer Disease Center. A total of 30 caregivers of persons with frontotemporal dementia (FTD) participated in 6 focus groups in 3 cities. The majority of participants were spouses ...

The research aims to analyze the caregivers' work developed with psychiatric patients in assisted living facilities. The research used the ethnographic method and is theoretically based on Interpretative Anthropology for the analysis of the meanings of practices related to the caregiver's work in these residential devices. The techniques used in ...

Within the 2000 pages of the 2010 Patient Protection and Affordable Care Act (ACA) is a short section authorizing the creation of the Patient-Centered Outcomes Research Institute (PCORI) - a research organization dedicated to the support and promotion of comparative clinical effectiveness research. The establishment of PCORI represents the culmination ...

Prostate cancer (CaP) disparities in the black man calls for concerted research efforts. This review explores the trend and focus of CaP research activities in Nigeria, one of the ancestral nations for black men. It seeks to locate the place of the Nigerian research environment in the global progress on ...

Clinicians and researchers working with dementia caregivers typically assess caregiver stress in a clinic or research center, but caregivers' stress is rooted at home where they provide care. This study aimed to compare ratings of stress-related measures obtained in research settings and in the home using ecological momentary assessment (EMA). ...

Background: Awareness can be defined as a reasonable or realistic perception or appraisal of a given aspect of one's situation, functioning or performance, or of the resulting implications, expressed explicitly or implicitly. Disturbances of awareness have significant implications for people with dementia and their caregivers. The construction of awareness has ...

Percutaneous endoscopic gastrostomy (PEG) is a proven feeding tube, just as the nasogastric tube is proven to be able to deliver enteral nutrition. For long-term use, both patient and caregiver want neither. What is desired is the LOOPPEG(®) 3G tube, more secure than the PEG, and less risky to change ...

 We describe the recruitment strategies and personnel and materials costs associated with two community-based research studies in a Mexican-origin population. We also highlight the role that academic-community partnerships played in the outreach and recruitment process for our studies. We reviewed study documents using case study methodology to categorize recruitment methods, ...

ABSTRACT: Although most neuromuscular disease research articles reflect traditional quantitative approaches, qualitative methods are becoming more prevalent in the neuromuscular literature. Arguably, qualitative research provides rich data that may be used to generate patient-centered outcome measures or influence current standards of care. The purpose of this article is to explore ...

Despite its several variations, the central position of equipoise is that subjects in clinical experiments should not be randomized to conditions when others believe that better alternatives exist. This position has been challenged over issues of which group in the medical or research community is authorized to make that determination, ...

Leftover newborn spots can provide a powerful research tool as a population-wide DNA bank. Some provinces/states store them for more than 20 years; however, parents are usually not informed of the retention of leftover newborn spots. To examine the opinions of Canadian geneticists regarding permission for leftover newborn spots storage ...

Biobanks for long-term research pose challenges to the legal and ethical validity of consent to participate. Different models of consent have been proposed to answer some of these challenges. This paper contributes to this discussion by considering the meaning and value of consent to participants in biobanks. Empirical data from ...

Introduction Understanding the views of the public is essential if generally acceptable policies are to be devised that balance research access to general practice patient records with protection of patients' privacy. However, few large studies have been conducted about public attitudes to research access to personal health information. Methods A ...

We reviewed resources for researchers interested in privacy issues surrounding secondary use of health data for research. These included applicable privacy regulations and available information on privacy perception in Australia. The review is timely because the current Australian Population Health Research Network infrastructure investments are likely to attract new researchers ...

Current laws, practices, and concerns about privacy inhibit access to health data for research. Barriers include inconsistent Institutional Review Board policies and complicated and costly procedures to obtain the consent of patients for release of their information. To realize the promise of comparative effectiveness research, it is essential to develop ...

In some criminal cases a forensic psychiatrist is asked to make an assessment of the state of mind of the defendant at the time of the legally relevant act. A considerable number of people seem to hold that the basis for this assessment is that free will is required for ...

Neurogenetics promises rich insights into how the mind works. Researchers investigating the range of topics from normal brain functioning to pathological states are increasingly looking to genetics for clues on human variability and disease etiology. Is it fair to assume this interest in neurogenetics is universal? How should researchers and ...

Capacity to consent is a basic prerequisite for participation of patients as probands in research. However, mental illness often impairs this competence. Therefore, in psychiatric research, the first obligation is to assess a mentally ill patient's competence to consent. This is not a simple task. Informed consent should be viewed ...

Contemporary research ethics policies started with reflection on the atrocities perpetrated upon concentration camp inmates by Nazi doctors. Apparently, as a consequence of that experience, the policies that now guide human subject research focus on the protection of human subjects by making informed consent the centerpiece of regulatory attention. I ...

In developed countries, informed consent is based on the autonomy of the individual, a written description of the studies proposed, and previous experience of the participant with Western medicine. Consent is documented by the signature of the participant and supervised by institutional review boards (IRBs), which have conflicts of interest ...

There are several features of genetic and genomic research that challenge established norms of informed consent. In this paper, we discuss these challenges, explore specific elements of informed consent for genetic and genomic research conducted in the United States, and consider alternative consent models that have been proposed. All of ...

No consensus exists about when researchers need additional participant consent (reconsent) to submit existing data to the federal database of Genotypes and Phenotypes (dbGaP). Re-consent for submission of their data to dbGaP was sought from 1,340 study participants, 1,159 (86%) of whom agreed. We invited the first 400 of those ...

Complex and sometimes controversial information must be conveyed during the consent process for participation in biorepositories, and studies suggest that consent documents in general are growing in length and complexity. As a first step toward creating a simplified biorepository consent form, we gathered data from multiple stakeholders about what information ...

Acute stroke trials are becoming increasingly multinational. Working toward a shared ethical standard for acute stroke research necessitates evaluating the degree of consensus among international researchers. We surveyed all 275 coinvestigators and coordinators who participated in the AbESTT II study (evaluating abciximab vs placebo) about their experience with their local ...

Several studies suggest that many parents and research participants have poor understanding of the elements of consent, particularly the risks and benefits. However, some data suggest that the format and framing of research risks and benefits may be an important determinant of subject understanding. We examined the effect of tabular ...

This international self-administered survey describes the attitudes of 279 patients, who had previously donated samples, regarding informed consent for future genomic research on donated tissue and explores factors associated with these attitudes. Most of the patients supported a fairly broad consent unless research was industry-sponsored. In multivariate analysis, support for ...

The attitudes towards the reuse for research of biological samples that were gathered in a diagnostics context have changed over the last years. A few decades ago, people would not hesitate to use such samples without explicit consent. Then, in conjunction with a move towards a stress to personal autonomy ...

PURPOSE: To investigate research consent capacity (RCC) in patients with malignant gliomas (MGs) and identify cognitive abilities and clinical factors associated with RCC in MG. PATIENTS AND METHODS: Participants were 22 healthy controls and 26 patients with diagnosed and histologically verified MG. All patients with MG were receiving various combinations ...

Governance, underlying general ICT (Information and Communication Technology) architecture, and workflow of the Central Research Infrastructure for molecular Pathology (CRIP) are discussed as a model enabling biobank networks to form operational "meta biobanks" whilst respecting the donors' privacy, biobank autonomy and confidentiality, and the researchers' needs for appropriate biospecimens and ...

There is a paucity of information regarding the optimal method of presenting risk/benefit information to parents of pediatric research subjects. This study, therefore, was designed to examine the effect of different message formats on parents' understanding of research risks and benefits. An Internet-administered survey was completed by 4,685 parents who ...

Research on tractor safety has not focused on user manuals. This study focuses on tractor operator manuals, specifically safety warnings, selected from the files of the Tractor Test facility at University of Nebraska-Lincoln. Analysis of many common warnings, based on readability and legibility research, shows that many warnings contain excessive ...

This paper aims to: • Consider the major challenges to involving people with dementia in qualitative research. • Critique a process consent framework. • Demonstrate the need for nurses and researchers to explore these issues in research and practice with people with dementia. • Consider the impact of the Mental ...

Genetic research often utilizes or generates information that is potentially sensitive to individuals, families, or communities. For these reasons, genetic research may warrant additional scrutiny from investigators and governmental regulators, compared to other types of biomedical research. The informed consent process should address the range of social and psychological issues ...

OBJECTIVES: The objectives of the study are to understand the current practice of informed consent in medical research in public hospitals in Shanghai, and to share our views with other countries, especially developing countries. METHODS: In the study, 145 consent forms (CFs) of the selected research projects in eight public ...

Informed consent has been widely discussed in the ethics, legal, research, and clinical literature. Authors have addressed the ethical and legal bases for informed consent, its components, and its implementation both in research and in healthcare delivery. However, although there is considerable literature on the subject and the inclusion of ...

Formal and informal fallacies refer to errors in reasoning or logic, which result from invalid arguments. Formal fallacies refer to arguments that have an invalid structure or 'form', while informal fallacies refer to arguments that have incorrect or irrelevant premises. There are many formal and informal fallacies that could theoretically ...

This manuscript describes the responses and correlates of outpatients with schizophrenia spectrum disorders to a tool designed to measure comprehension before obtaining informed consent for research participation. We used the Evaluation to Sign Consent form to document comprehension in 100 outpatients as part of their consent to participate in an ...

Within the EU project "NewGeneris" human placental perfusion has been used for assessing in utero fetal exposure to food carcinogens. Within the work package of ethical aspects of the research, we were interested in the way mothers who donated placentas for perfusion perceived their participation in the study. Thematic interviews ...

OBJECTIVES: To describe, determine the incidence of, and explain the adverse reactions associated with the use of sclerotherapy and sclerosing agents. MATERIAL AND METHODS: Review of current literature and personal research, with special attention to the French registry of 12,173 sclerotherapy sessions. RESULTS: The nature and incidence of side effects ...

This research studies the differences between productivity-oriented (or utilitarian) and entertainment-oriented (or hedonic) usefulness for a multipurpose information system in user acceptance models, as information systems can be high or low in both hedonic and utilitarian attributes. Accordingly, perceived usefulness (PU) is divided into perceived utilitarian usefulness (PUU) and perceived ...

It is widely held that individuals who are unable to provide informed consent should be enrolled in clinical research only when the risks are low, or the research offers them the prospect of direct benefit. There is now a rich literature on when the risks of clinical research are low ...

We argue that, in the case of research biobanks, there is a need to replace the currently used informed consent with trusted consent. Accordingly, we introduce a proposal for the structure of the latter. Further, we discuss some of the issues that can be addressed effectively through our proposal. In ...

Assisted reproductive technologies are increasingly more present in our everyday life: from classical sperm/egg donation or in vitro fertilization to newer, more controversial methods such as surrogate motherhood, male pregnancies or posthumous sperm procurement. Every year, new concepts are emerging in this field and the medical world is not always ...

Research ethics guidelines do not provide sufficient direction for breastfeeding and human lactation studies. This article presents the principles of consent for research studies and discusses rationales for who should consent for infants in lactation and breastfeeding research studies.

Extensive efforts have been aimed at understanding the genetic underpinnings of complex diseases that affect humans. Numerous genome-wide association studies have assessed the association of genes with human disease, including the Framingham Heart Study (FHS), which genotyped 550,000 SNPs in 9,000 participants. The success of such efforts requires high rates ...

Emergency research poses a fundamental ethical dilemma: prohibit valuable research because informed consent is not possible or enroll individuals in clinical trials without informed consent. Although emergency research without initial consent is allowable in the United States, its regulatory status remains uncertain internationally. More important, no ethical justification for emergency ...

The accuracy of information obtained in forensic interviews is critically important to credibility in the legal system. Research has shown that the way interviewers frame questions influences the accuracy of witnesses' reports. A separate body of research has shown that speakers gesture spontaneously when they talk and that these gestures ...

Assessing informants' credibility is critical to several aspects of the legal process (e.g., when police interrogate suspects or jurors evaluate witnesses). There is a large body of research--from various areas of psychology and allied fields--about how people evaluate each others' credibility. We review the literature on lie detection and interpersonal ...

To encourage evidence-based practice, an Annals of Internal Medicine editorial called for a new professional on clinical teams: an informationist trained in science or medicine as well as information science. The study explored the effects of informationists on information behaviors of clinical research teams, specifically, frequency of seeking information for ...