Information for Healthcare Professionals
Calcific uraemic arteriolopathy or calciphylaxis as it is frequently called is a syndrome of medial calcification of small arteries leading to painful ischaemia and ulceration, usually of the skin, occurring almost exclusively in patients with chronic kidney disease (CKD).
True disease incidence, causes and effective treatment are unknown.
This collaborative research project has been set up to build a robust epidemiological dataset and biological tissue bank, to improve our understanding of the disease and help in the search for effective treatments.
Aims & Objectives
- To set-up a Calciphylaxis Registry and perform 2 years' data collection across the UK & Germany.
- To obtain archived tissue samples from participating centres in the UK & Germany.
- To set-up a prospective tissue-bank comprising blood, tissue and DNA from patients with Calciphylaxis in both participating countries over the same time period
Study Schema for Incident Patients
- The patient is registered via this website and study number issued
- The baseline data collection form is downloaded, filled in and emailed or faxed. (Clinical information on comorbidity, RRT, medications, standard laboratory variables, skin lesions and diagnosis)
- Plasma/Serum and clotting samples will be taken at baseline, week 1 & 2, 1 month and after full healing should this occur (see study protocol). Samples will be frozen at –20C locally and our project coordinator will arrange sample pickup including dry ice. Samples will be tested for serum levels of promoters and inhibitors of calcification, and clotting factor deficiencies.
- A DNA sample will be taken at baseline and frozen at –20C, then shipped as above.
- 4 monthly follow-up clinical and laboratory data collection until full recovery or death, will be requested via an email prompt to the Local contact/lead consultant.
- Final bloods will be taken after full healing should this occur.