To explore whether an accurate, robust and cost-effective method can be developed for the routine measurement of the rare diseases diagnostic odysseys to enable the impact of interventions and policies, such as the 2013 UK Strategy for Rare Diseases, to be evaluated
International audienceAbstractBackgroundEvidence-based clinical practice is challenging in all field...
Abstract Background Rare diseases (RD) are a diverse collection of more than 7–10,000 different diso...
Public health relies on technologies to produce and analyse data, as well as effectively develop and...
Rare diseases are individually rare but collectively common, with a combined prevalence of 3.5–5.9%....
Abstract Background About 30 million individuals in the United States are living with a rare disease...
A timely diagnosis is a critical step to ensure a proper access to expert clinical management for pa...
International audienceBACKGROUND:Although rare disease patients make up approximately 6-8% of all pa...
Objectives: Rare diseases are often heterogeneous in their progression and response to treatment, wi...
Purpose Recognizing rare diseases (RDs) and initiating appropriate investigation an...
According to the WHO a disease or disorder is defined as rare in Europe when it affects fewer than ...
Rare diseases (RDs) are complicated health conditions that are difficult to be managed at several le...
Date of Acceptance: 29/05/2015 The research leading to these results has received funding from the (...
Abstract Background Rare diseases are a global public health priority. Though each disease is rare, ...
Abstract Background Rare disease diagnosis is often delayed by years. A primary factor for this dela...
The measurement of costs is fundamental in healthcare decision-making, but it is often challenging. ...
International audienceAbstractBackgroundEvidence-based clinical practice is challenging in all field...
Abstract Background Rare diseases (RD) are a diverse collection of more than 7–10,000 different diso...
Public health relies on technologies to produce and analyse data, as well as effectively develop and...
Rare diseases are individually rare but collectively common, with a combined prevalence of 3.5–5.9%....
Abstract Background About 30 million individuals in the United States are living with a rare disease...
A timely diagnosis is a critical step to ensure a proper access to expert clinical management for pa...
International audienceBACKGROUND:Although rare disease patients make up approximately 6-8% of all pa...
Objectives: Rare diseases are often heterogeneous in their progression and response to treatment, wi...
Purpose Recognizing rare diseases (RDs) and initiating appropriate investigation an...
According to the WHO a disease or disorder is defined as rare in Europe when it affects fewer than ...
Rare diseases (RDs) are complicated health conditions that are difficult to be managed at several le...
Date of Acceptance: 29/05/2015 The research leading to these results has received funding from the (...
Abstract Background Rare diseases are a global public health priority. Though each disease is rare, ...
Abstract Background Rare disease diagnosis is often delayed by years. A primary factor for this dela...
The measurement of costs is fundamental in healthcare decision-making, but it is often challenging. ...
International audienceAbstractBackgroundEvidence-based clinical practice is challenging in all field...
Abstract Background Rare diseases (RD) are a diverse collection of more than 7–10,000 different diso...
Public health relies on technologies to produce and analyse data, as well as effectively develop and...