Reporting

What to do if you have a suspected case of calciphylaxis

  1. Please register your patient using the following link using the patient’s NHS or hospital number, initials and DOB as well as your own contact details
You will then be issued with a study number so that all future data transfer is anonimised.
  1. Then download the study documentation including patient information leaflet and consent form from the study documentation section.
  2. Fill in study documentation and email or fax back to the address on the data collection form.
We will post out study labels immediately following patient registration for biological samples.
  1. Take baseline bloods as per study protocol (standard plasma, serum, clotting samples + 1 edta sample for DNA analysis.)
  2. Store locally until repeat samples have been taken (baseline, 1 week, 2 weeks and 1 month with email prompt 48 hours before repeat samples required).
We will arrange shipping including dry-ice pickup.
  1. Follow-up data will be requested at 4 monthly intervals via email prompt until full healing or death.

What to do if you wish to send in archived calciphylaxis tissue for banking

Archived paraffin blocks should be labelled with study labels, placed in padded envelopes and sent to Dr Maria Jeziorska as per study address labels.

What to do if you think a biopsy is clinically indicated in an incident case of calciphylaxis or an amputation is planned

Please contact us urgently and we will ensure that you receive pre-prepared specimen pots and buffer to process the samples; clinicians may wish to involve local histopathology technicians to help with the tissue processing. Tissue obtained at surgical debridement or amputation will only be appropriate if macroscopically normal tissue distant from necrotic tissue is available. Please see Protocol Summary below.

Study Documentation

If you need advice at any time on any aspect of the study please ring or email Sr Lesley Haycock - (lead nurse) or Dr Smeeta Sinha (lead clinician)