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This User's Guide is intended to support the design, implementation, analysis, interpretation, and quality evaluation of registries created to increase understanding of patient outcomes. For the purposes of this guide, a patient registry is an organized system that uses observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition, or exposure, and that serves one or more predetermined scientific, clinical, or policy purposes. A registry database is a file (or files) derived from the registry. Although registries can serve many purposes, this guide focuses on registries created for one or more of the following purposes: to describe the natural history of disease, to determine clinical effectiveness or cost-effectiveness of health care products and services, to measure or monitor safety and harm, and/or to measure quality of care.

Agency for Healthcare Research and Quality (US).

Version: April 2014

Type 1 diabetes affects over 370,000 adults in the UK, representing approximately 10% of adults diagnosed with diabetes. Given the complexity of its treatment regimens, successful outcomes depend, perhaps more than with any other long-term condition, on full engagement of the adult with type 1 diabetes in life-long day-by-day self-management. In order to support this, the health service needs to provide informed, expert support, education and training as well as a range of other more conventional biomedical services and interventionsfor the prevention and management of long term complications and disability.

NICE Guideline - National Clinical Guideline Centre (UK).

Version: August 2015

Study found that community engagement interventions are effective across a wide range of contexts and using a variety of mechanisms and that public health initiatives should incorporate community engagement into intervention design.

Public Health Research - NIHR Journals Library.

Version: November 2013

How do we know whether a particular treatment really works? How reliable is the evidence? And how do we ensure that research into medical treatments best meets the needs of patients? These are just a few of the questions addressed in a lively and informative way in Testing Treatments. Brimming with vivid examples, Testing Treatments will inspire both patients and professionals.

Pinter & Martin.

Version: 2011

This guideline has been developed to advise on the treatment and management of bipolar disorder. The guideline recommendations have been developed by a multidisciplinary team of healthcare professionals, patients and guideline methodologists after careful consideration of the best available evidence. It is intended that the guidelines will be useful to clinicians and service commissioners in providing and planning high quality care for those with bipolar disorder while also emphasising the importance of the experience of care for patients and carers.

NICE Clinical Guidelines - National Collaborating Centre for Mental Health (UK).

Version: 2006

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