In this report, we discuss the results of a survey on genetic haemochromatosis treatment approaches.

Executive Summary

• For most patients with genetic haemochromatosis, venesection is the primary treatment method with the aim to lower ferritin and transferrin saturation levels to the reference range.
• In this study 98% of the participants received venesection and 2% received chelation for treatment.
• Iron chelation is rarely used, chiefly on cost grounds.
• 88.4% of the participants had their venesections at NHS primary or secondary care facilities while 14.65 % at a blood donor venue.
• Venesection was typically undertaken weekly or fortnight pre-maintenance and quarterly thereafter.
• The average time to reach maintenance for both males and females was 12 to 18 months.

About the Author

Maureen Ng’etich is MSc. Health Data Science student at the University of Swansea, United Kingdom with a background in Health Informatics. She is a recipient of the prestigious Chevening scholarship award.

From May to July 2022, she interned at Haemochromatosis UK as a Health Data Research intern, where she conducted this study.

Maureen previously worked as a Health Informatics Officer in Kenya where she engaged and supported the effective utilisation of Electronic Medical Records to enhance performance and provided statistical and analytical support to routine health reports.