A leading UK TMAU Activist requested a Freedom of Information reply from Sheffield Children's Hospital about their TMAU testing.
Below is the reply ...
I refer to your Freedom of Information request received 22 March 2019.
Please note we can only respond on behalf of the Clinical Chemistry diagnostic laboratory at Sheffield Children's Hospital and not on the behalf of the whole of the NHS.
In 2014 Nigel Manning, who set up the TMAU (trimethylaminuria) service in Sheffield, retired from the NHS and several new members of staff were assigned to different roles to collectively ensure continuity of the TMAU service. Due to age the equipment used for TMAU measurement had begun to be unreliable which was impacting turnaround times for the service. The decision was made to reinvest in the service and to purchase new equipment. Since we had to re-validate the method on the new equipment the decision was made at this time to also update the method to make it more robust, reduce the possible impact of any interferences, and to ensure that it conformed to new rules about the validation of analytical methods as defined by UKAS (UK accreditation service). The new method came in to service in 2017 and has been inspected and accredited by UKAS under the rules for diagnostic laboratories. We have also begun a sample exchange programme with four other international laboratories where we take it in turns to circulate samples which we all analyse and then compare results. So far there has been good agreement between labs, in particular agreeing on whether results are normal or indicative of trimethylaminuria.
Please note, not all causes of malodour can been ruled out by this test. Malodour can be caused by other volatiles which are not picked up by this test. As an inherited metabolic disease laboratory in a paediatric hospital our primary remit is to diagnose patients with inherited metabolic disease, which includes primary TMAU caused by FMO3 deficiency, but individuals with secondary TMAU will also identified if levels are high at the time of testing. We always recommend that analysis of the FMO3 gene is carried out during investigations to confirm a primary diagnosis.
The following presentation was given to patients and representatives of the TMAU community in 2018 and may provide further useful information:
http://www.sheffieldlab.org.uk/site/home/downloads.asp - Trimethylamine presentation March 2018
The number of requests since the new method (February 2017) is: 1090
Please note we can only respond on behalf of the Clinical Chemistry diagnostic laboratory at Sheffield Children's Hospital and not on the behalf of the whole of the NHS.
In 2014 Nigel Manning, who set up the TMAU (trimethylaminuria) service in Sheffield, retired from the NHS and several new members of staff were assigned to different roles to collectively ensure continuity of the TMAU service. Due to age the equipment used for TMAU measurement had begun to be unreliable which was impacting turnaround times for the service. The decision was made to reinvest in the service and to purchase new equipment. Since we had to re-validate the method on the new equipment the decision was made at this time to also update the method to make it more robust, reduce the possible impact of any interferences, and to ensure that it conformed to new rules about the validation of analytical methods as defined by UKAS (UK accreditation service). The new method came in to service in 2017 and has been inspected and accredited by UKAS under the rules for diagnostic laboratories. We have also begun a sample exchange programme with four other international laboratories where we take it in turns to circulate samples which we all analyse and then compare results. So far there has been good agreement between labs, in particular agreeing on whether results are normal or indicative of trimethylaminuria.
Please note, not all causes of malodour can been ruled out by this test. Malodour can be caused by other volatiles which are not picked up by this test. As an inherited metabolic disease laboratory in a paediatric hospital our primary remit is to diagnose patients with inherited metabolic disease, which includes primary TMAU caused by FMO3 deficiency, but individuals with secondary TMAU will also identified if levels are high at the time of testing. We always recommend that analysis of the FMO3 gene is carried out during investigations to confirm a primary diagnosis.
The following presentation was given to patients and representatives of the TMAU community in 2018 and may provide further useful information:
http://www.sheffieldlab.org.uk/site/home/downloads.asp - Trimethylamine presentation March 2018
The number of requests since the new method (February 2017) is: 1090
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