Access to Stem Cell Transplant Study
Study description
A study between the University of Birmingham (UoB) and NHS Blood and Transplant (NHSBT) to help improve access to Stem Cell Transplant (SCT).
The aim of this study is to understand the experiences of patients diagnosed with Acute Myeloid Leukaemia (AML) and Myelodysplastic Syndromes (MDS), care givers* when accessing SCT and healthcare professionals (HCPs) involved in AML and MDS treatment.
Blood cancers are the fifth most common cancer type (41, 000 patients diagnosed yearly) and the third largest cause of cancer-related death (16, 000 deaths yearly) the UK (Blood Cancer UK). SCT is a potential cure for those patients with poor prognosis on chemotherapy alone and cases difficult to treat using standard of care treatment. However, research suggests that not all patients have access to this treatment. We want to understand the experience of AML and MDS patients and care givers when accessing SCT and HCPs involved in AML and MDS treatment, the decision-making process when considering AML and MDS treatment options and factors affecting SCT access.
There is currently no research in England to understand and explore the patient, care givers, HCPs experience when diagnosed with/treating AML and MDS, which may be preventing changes to be made to the treatment pathway to help level up SCT access and improve survival of these patients.
*defined as individuals who have an active role in supporting the patient through their treatment.
We are looking for patients diagnosed with AML or MDS, caregivers and HCPs take part in a one -hour interview about their experience of accessing treatment.
Study information
- Approval: This is a multi-centre study approved by the Health Research Authority (HRA), Care Research Wales (HCRW) and Research Ethics Committee (REC) 25/LO/0584
- Timeline: September 2025 - March 2026
- Type of involvement: Interview in person, by telephone or online at a convenient time and place for you
- Time commitment: 1 hour
- Reimbursement: £25 shopping voucher will be offered to participants. Travel and childcare expenses can be covered.
Meet the researcher
This study is being led by Zareen Deplano, a research fellow at NHS Blood and Transplant (Cell, Apheresis & Gene Therapies, NHSBT) funded to do a PhD within the Department of Applied Health Sciences, University of Birmingham.
Get involved
AML and MDS Patients
AML and MDS Patients
Have you been diagnosed with Acute Myeloid Leukaemia (AML) or Myelodysplastic Syndromes (MDS)?
Could you take part in research to improve access to Stem Cell Transplant?
What is the study about?
We want to understand the experience of AML or MDS patients’ experience when accessing treatment for their condition.
Who can take part?
- Are you between 18-80 years old?
- Do you have an AML or MDS diagnosis?
What is involved?
- Translators and interpreters will be provided, if required
- Talking to a researcher about your experiences online, by phone, or face-to-face
- Taking part will not affect your treatment and care
- A £25 shopping voucher will be offered to participants as a thank you.
To find out more and express your interest in taking part, you can call Zareen on 07379076690, e-mail SCTproject@contacts.bham.ac.uk or complete this form.
Caregivers
Caregivers
Are you a caregiver to an Acute Myeloid Leukaemia (AML) or Myelodysplastic Syndromes (MDS) patient?
Could you take part in research to improve access to Stem Cell Transplant (SCT)?
What is the study about?
We want to understand the experience of caregivers who support an AML or MDS through their diagnosis and treatment.
Who is eligible?
An individual who has an active role in supporting an AML or MDS patient through their treatment.
What is involved?
- Translators and interpreters will be provided, if required
- Talking to a researcher about your experiences online, by phone, or face-to-face
- Taking part will not affect treatment and care
- £25 shopping voucher will be offered to participants
To find out more and to express your interest in taking part, you can call Zareen on 07379076690, e-mail SCTproject@contacts.bham.ac.uk or complete this form.
Healthcare Professionals
Healthcare Professionals
Are you involved in the treatment of patients with Acute Myeloid Leukaemia (AML) or Myelodysplastic Syndrome (MDS)?
Could you take part in research to improve access to Stem Cell Transplant (SCT)?
What is the study about?
This study will explore the experience of healthcare professional who treat AML and MDS.
patients. This is a multicentre study sponsored by the University of Birmingham in collaboration with NHS Blood and Transplant, approved by the NHS Health Research Authority and funded the National Institute of Health Research.
Who is eligible?
Healthcare professionals (HCPs) involved in the treatment and care of AML or MDS patients.
What is involved?
- Talking to a researcher about your experiences online, by phone, or face-to-face
- £25 shopping voucher will be offered to participants
To find out more, click here or to to express your interest in taking part, you can call Zareen on 07379076690, e-mail SCTproject@contacts.bham.ac.uk or complete this form.
STC Healthcare Professionals Participant Information Sheet
Funding
This study forms part of a bigger project funded by the National Health and Care Research (NIHR) exploring inequities to referrals and access to stem cell transplant (Policy Research Programme). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.
About my data
The University of Birmingham is responsible for looking after your information and using it properly. We will be using information that you share with us to undertake this study and will use the minimum personally identifiable information possible, following all privacy and GDPR rules.
Transcription of the interview recording will be done by a specialist transcription company based in the UK in accordance with the Data Protection Act 2018 and the audio recordings will only be held until transcription is complete. Responsible members of the University of Birmingham may be given access to data for monitoring and/or audit of the study to ensure that the research is complying with applicable regulations.
We will keep identifiable information about you at the University of Birmingham for ten years after the end of the study, in line with the University of Birmingham policy. We will make sure no one can work out who you are from the reports we write.
You can stop being part of the study at any time, without giving a reason. If you choose to withdraw, you may also request that your data be removed from the study. Where possible, this data will be permanently deleted and excluded from further analysis. However, we may be unable to remove any information from the study that has been anonymised and included for data analysis.
You can find out more about how we use your information
- by asking a member of the research team
- by contacting the University of Birmingham Data Protection Office: dataprotection@contacts.bham.ac.uk
Patient data and research leaflet - Health Research Authority
What happens after?
After the study the researchers will work together with patient groups and health professionals to review the results and agree on what health services should be put in place to provide good care for AML and MDS patients and their caregivers. The results and recommendations from the study will be shared in talks, publications, reports and online, to help improve care.
What if there is a problem?
If you wish to complain about any aspect of your involvement in this study, please contact the University of Birmingham Research Governance Office researchgovernance@contacts.bham.ac.uk, or PALS at the NHS hospital where you receive care.
Thank you for reading this information and considering taking part in this study. We hope we can make stem cell treatment accessible for everyone that needs it.
Zareen Deplano, NHS BT Research Fellow
Contact us
Contact us
Telephone: 07379076690