Winner of the 2025 Janet Fernau Award, Professor Lewis Gough (lead researcher), Professor Kiara Lewis (co-investigator) present a mixed methods investigation into the experiences of patients with genetic haemochromatosis during and following venesection treatment. 

Project Aims 

1. Investigate the experiences of haemochromatosis patients during and following treatment
2. Investigate the day-to-day symptoms experienced by haemochromatosis patients during and following treatment
3. Investigate the multi-stakeholder beliefs on the patient experience during and following treatment.

What benefits will you receive?

During this study you will be able to have your voice heard on haemochromatosis. By taking part, it will lead to an increase in awareness and understanding of this complex condition.

What does the project involve?

This study is in two parts, as described below. You may wish to take part in one or both studies. You do not have to take part in both studies if you do not wish to.

Part 1 – Focus groups (open to patients, charities, clinicians, and academics)
You will attend a 45-60 min focus group to discuss your experience (or experience of patients) during and following venesection treatment. Focus groups will be individual groups, so for example, if you are a patient, you will only be with other patients.

Do I qualify?

• Patients with a confirmed diagnosis of haemochromatosis
• Charities who represent haemochromatosis patients
• Academics with at least 3 international peer-reviewed articles in haemochromatosis
• Clinicians who currently have patients with haemochromatosis under their care

There will be an option to attend in-person or online to suit your availability and geographical location. The focus groups are to be held on 30th October, 6th November and 11th of December between 6:00pm - 7:15pm.

Register for any one of the focus groups here: 

Thu Oct 30, 2025 at 6:00 PM

Thu Nov 6, 2025 at 6:00 PM

Thu Dec 11, 2025 at 6:00 PM

Part 2 – observational study (open to patients or control groups only)
You will be invited to take part in a 4-week observation. Birmingham City University will also recruit a control group that does not have haemochromatosis to draw comparisons. All data can be collected online through Microsoft Forms, or you can choose a paper based option.
For this study you will be provided with a voucher (only upon completion) to the value of £30 (only applies to part 2 of this study).

Do I qualify?

Haemochromatosis group – you will have a confirmed diagnosis of haemochromatosis and are currently undergoing venesection treatment, or have completed treatment until maintenance. You must be over 18 and there is no age limit in this study.
Control group – you be in good general health with no known diagnosis of morbidity and not taking any medicines that could influence heamochromatosis (such as prescribed iron tablets). You will also have normal iron status (i.e., not be anaemic). You must be over 18 and there is no age limit in this study.

 Register your interest for Part 2

or email Professor Lewis Gough: [email protected]

What are the possible disadvantages and risks of taking part?

Some topics of conversation might upset you. You will be offered a debriefing at the end of each session, and will be provided with information about support services or helplines should you experience distress afterward. You may also be prompted to speak with your GP.

Can you stop taking part?

Participation is voluntary. You have the right to withdraw yourself and your data at any time within the study up until the point of data analysis when all data has been anonymised and processed. If you would like to withdraw from the study, please contact the lead researcher by email ([email protected]).

Will my taking part in the study be kept confidential?

All participants will have a right to confidentiality and anonymity throughout the project. You will be given an individual code which will relate to your data throughout the study. This will anonymise your data so you will not be identifiable, and this code/data will only be known and stored by the research team stated. Only the lead researcher and research team outlined above will have access to the full dataset. The coding sheet (and relevant data) and any data will be stored on a secure online cloud system (BCU One Drive). Research data will be stored until completion of the project +10 years in accordance with GDPR policy. All data will be erased from all files in line with guidance from the BCU Records Management Policy and Guidance. This study has ethical approval from Birmingham City University.

How will your data be used?

This data will be used for academic publication and conferences. The data may also be disseminated to other interested stakeholders (e.g., healthcare and charities). If you wish to raise concerns about how your data is used, please contact the Birmingham City University Data Protection Officer ([email protected]).

What if there is a problem?

Primarily please discuss any concerns or issues with myself (Professor Lewis Gough, [email protected]) or Professor Kiara Lewis ([email protected]). If you have a complaint, please contact the Birmingham City University Faculty Academic Ethics Committee (FAEC) ([email protected]).
For Data Protection and Complaints: Data Protection Officer on [email protected] or +44 (0)121 331-5288 or Data Protection Officer, Information Management Team, Birmingham City University, University House, 15 Bartholomew Row, Birmingham, B5 5JU. You can also complain to the Information Commissioner at Information Commissioner’s Office, Wycliffe House, Water Lane, Wilmslow, Cheshire, SK9 5AF, further information available at www.ico.org.uk