Amyloidosis is a rare disease that makes proteins in the blood fold up and damage organs in the body. Amyloidosis can cause peoples' hearts or kidneys to fail in a few years after getting it. Half of people with amyloidosis don't survive more than 2 years.
We don't have much up-to-date information about how many people in the United Kingdom (UK) have amyloidosis. While the disease is rare, there is some evidence that the disease might be becoming more common as the years go by. The purpose of this study is to come up with a current estimate for how many amyloidosis patients there are in the UK.
Knowing this information will benefit the public by helping doctors know how many and what types of amyloidosis patients to expect today and in the future. Usually studies of this type only look at patients in hospitals, but not at a large group of citizens getting care from their regular doctor. Also, it will help raise awareness of the condition in the UK, and potentially lead to earlier treatment.
The amyloidoses refer to a group of rare disorders of protein folding characterized by extracellular tissue deposition of misfolded and aggregated autologous proteins as Beta-pleated sheet fibrils. There is lack of current, nationally representative studies about the epidemiology of amyloidosis in the United Kingdom (UK). This study aims to provide an updated estimate of the prevalence and incidence of amyloidosis in the UK.
We will identify prevalent and incident patients >/=18 years old annually over the period of 1/1/2007-12/31/2017 (1/1/2008-12/31/2017 for incident patients) using diagnostic Read codes in the Clinical Practice Research Datalink (CPRD; code list below). Prevalent patients will be those with at least one diagnostic amyloidosis Read code recorded before the calendar year of interest (01 Jan) and who are still registered on 01 January of the calendar year of enumeration. Incident patients will be those with >/=1 diagnostic amyloidosis Read code in a given calendar year without for amyloidosis at any time prior to enumeration. The annual prevalence and incidence rates will be reported overall and by age and gender. Additionally, as part of the exploratory analysis, we will estimate prevalence and incidence of immunoglobulin light chain (AL) amyloidosis, the most common and severe type of amyloidosis.
Prevalence and incidence.
Multiple rates presented by:
- year
- gender
- age group (18-34, 35-54, 55-64, 65 or older)
Michael Broder - Chief Investigator - PHAR - Partnership For Health Analytic Research LLC
Michael Broder - Corresponding Applicant - PHAR - Partnership For Health Analytic Research LLC
Ashutosh Wechalekar - Collaborator - University College London ( UCL )
Eunice Chang - Collaborator - PHAR - Partnership For Health Analytic Research LLC
Jessie Tingjian Yan - Collaborator - PHAR - Partnership For Health Analytic Research LLC
Tiffany Quock - Collaborator - Prothena Biosciences Inc
HES Accident and Emergency;HES Admitted Patient Care;HES Outpatient;ONS Death Registration Data