Information for patients

To help with diagnosis or monitoring of a cutaneous porphyria, you may be asked to provide a blood, urine and/or faecal/stool sample. You may also be asked to disclose clinical information or details of your family history. Every request for analysis accepted by the Scottish Cutaneous Porphyria Service will be considered as an agreement between the requestor and the SCPS, and we will assume that patient consent has been obtained in accordance with NHS Tayside policy.

Samples are tested in the Scottish Cutaneous Porphyria Service laboratory. Some samples may be stored in case we need to refer to them in the future, or they may be sent away for further tests. Because porphyrins are sensitive to light, it is very important that any samples sent for porphyrin testing must be protected from light. A good way to do this is to wrap samples in foil. Wrapping in brown paper or a black bag can also be used if foil is not available. Samples that are not suitably protected from light may give inaccurate results.

Specimens should be returned or shipped to the laboratory as soon as possible to aid with accurate interpretation of test results.

There is further information in the How to collect samples for porphyrin analysis section below

Source: PBUL016 06/12/2023 Issue:1 Review:7