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Contact the study team using the details below to take part. If there are no contact details below please ask your doctor in the first instance.
Ms
Angelique
Smit
angelique.smit@nhs.net
Prof
Julian
Gillmore
julian.gillmore@nhs.net
Metabolic disorders
This information is provided directly by researchers, and we recognise that it isn't always easy to understand. We are working with researchers to improve the accessibility of this information. In some summaries, you may come across links to external websites. These websites will have more information to help you better understand the study.
Systemic amyloidosis is a group of rare, progressive and usually fatal disorders caused by the 'clumping' of abnormal proteins in organs throughout the body. Clinical diagnosis is very challenging since symptoms are non-specific; many patients experience significant diagnostic delay which negatively impacts survival. There is huge need to develop more sensitive, specific and accurate diagnostic and monitoring techniques, and also to understand how the build-up of amyloid protein impairs vital organ function. The National Amyloidosis Centre, established at the Royal Free Hospital in 1999, provides the only specialist NHS service for patients with amyloidosis, including a comprehensive series of nuclear medicine, CT and MRI imaging, histological, genetic, proteomic, blood and urine tests. The centre has a long track record of clinical innovation, both in refining existing tests and developing new ones. The research proposal here is to use routinely obtained clinical samples and routine clinical data to improve: (1) the diagnosis of amyloidosis and confirmation of its type; (2) the understanding of how amyloid deposition causes organ dysfunction; (3) physicians’ ability to assess prognosis and stage disease; (4) the assessment of response to treatment; and (5) understanding of susceptibility to amyloid and amyloidosis. Patients will undergo routine, standard-of-care tests appropriate to their diagnosis or suspected diagnosis. All patients attending the centre will be invited to participate and will remain in the study until end of life, are discharged, or withdraw consent.
Start dates may differ between countries and research sites. The research team are responsible for keeping the information up-to-date.
The recruitment start and end dates are as follows:
Observational type: Cohort study;
You can take part if:
You may not be able to take part if:
1. Patients who have not provided written consent, including those who lack mental capacity to do so.
Below are the locations for where you can take part in the trial. Please note that not all sites may be open.
The study is sponsored by ROYAL FREE LONDON NHS FOUNDATION TRUST and funded by BRITISH HEART FOUNDATION .
Your feedback is important to us. It will help us improve the quality of the study information on this site. Please answer both questions.
Read full details
for Trial ID: CPMS 49705
You can print or share the study information with your GP/healthcare provider or contact the research team directly.
