Epidemiology
There is little information about what causes myeloproliferative neoplasms (MPNs). Patients often ask, “why do I have this disease?”, and for the majority there is no obvious reason. The MOSAICC study (MyelOproliferative neoplasmS: An In-depth Case-Control) is a UK-wide study that aims to identify what causes myeloproliferative neoplasms (MPNs) and the best way to improve patients’ quality of life. The study is led by Professor Lesley Anderson, University of Aberdeen, Scotland and an international team of experts. The study started with a pilot in 2012 recruiting 106 MPN patients and 120 controls from Belfast and Southampton. The pilot study led to several publications (see below) and has identified potential risk factors for MPNs including obesity and smoking. However, a larger study was needed. Working with MPN Voice and other charities (Leukaemia and Lymphoma NI and Friends of Anchor) the MOSAICC study team have funding in place to start recruiting patients and their non-blood relative/friend controls across UK sites.
Can I take part?
There are currently 19 research sites in the UK (5 in Northern Ireland, 2 in Scotland, 1 in Wales and 11 in England, plus 1 in Cork, Ireland and 4 more planned sites for 2023.
The study will recruit newly diagnosed patients (within 24 months from diagnosis) from across the study sites (see map). There will be a phased opening of sites so please wait until your clinical team ask you to take part.
What is involved?
If you are eligible and agree to participate your clinician will provide information on your medical records to the study team and you can complete ALL or ANY of the following:
• Occupation/residence history calendar
• Telephone interview about your occupation, lifestyle and personal information
• Quality of life questionnaires
• Provide a blood sample (at your next appointment)
• Provide a saliva sample (complete at home and post to the study team)
• Provide some toenail clippings (to measure elements in your diet and exposures to environmental elements)
In order to determine possible causes of myeloproliferative neoplasms, we need to compare the information collected to people without the condition. If you participate in the study we would like to request that you give an envelope to a non-blood relative or friend, who is the same sex as you and aged no more than 10 years older or younger, asking them to take part in the study. By comparing information from you (case) and the other person (control) we can learn a lot about myeloproliferative neoplasms.
What will happen to the results of the research study?
The study will take at least three years to complete. The results will be presented at professional conferences and to local charitable groups (such as MPN Voice). We intend to publish the results in leading academic journals and other health publications. Information regarding the progress of the study will be made available via our study website in the coming months.
Next steps and funding
The MOSAICC study will open shortly on a phased basis. The research team are keen to make the best use of the data and samples provided as part of this study. They are seeking additional funding to 1) investigate the impact of diagnosis, 2) to conduct geospatial analysis, 3) to investigate the role of vitamin D in MPNs and 4) to investigate the role of the gut microbiome. This is where you can help by donating to, or fundraising for, the MOSAICC Study via our JustGiving fundraising page.
The study team would like to thank everyone who has contributed to the study to date and look forward to your continued support.
Publications:
Modifiable lifestyle and medical risk factors associated with myeloproliferative neoplasms. Duncombe AS, Anderson LA, James G, de Vocht F, Fritschi L, Mesa R, Clarke M, McMullan MF. HemaSphere 2020; 4(1):e327.https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7000482/pdf/hs9-4-e327.pdf
The MOSAICC study: Assessing feasibility for biological sample collection in epidemiology studies and comparison of DNA yields from saliva and whole blood samples. James G, McMullin MF, Duncombe AS, Clarke M, Anderson LA. Ann Hum Genet. 2017;82(2):114-118.The MOSAICC study: Assessing feasibility for biological sample collection in epidemiology studies and comparison of DNA yields from saliva and whole blood samples (wiley.com)
Myeloproliferative neoplasm patient symptom burden and quality of life: evidence of significant impairment compared to controls. Anderson LA, Titmarsh GJ, Duncombe AS, Mesa R, Scherber R, Dueck AC, de Vocht F, Clarke M, McMullin MF. Am J Haematol 2015 Am J Haematol 2015;90(10):864-870.Myeloproliferative neoplasm patient symptom burden and quality of life: Evidence of significant impairment compared to controls (wiley.com)
Minor allele frequency of myeloproliferative neoplasm mutations in the Irish blood donor population. Titmarsh GT, McKay GJ, Lawler M, Anderson LA, McMullin MF. Haematological Oncology 2016;34(3):161-164.Minor allele frequency of myeloproliferative neoplasm mutations in theIrish blood donor population (wiley.com)
Patient perspectives of a diagnosis of myeloproliferative neoplasm in a case control study. McMullin MF, James G, Duncombe AS, de Vocht F, Fritschi L, Clarke M, Anderson LA. Exp Hem &Onc 2016;5(1).https://research-information.bris.ac.uk/ws/portalfiles/portal/73775802/2016_McMullinetal_Exp_Hematol_Oncol.pdf
How common are myeloproliferative neoplasms? A systematic review and meta-analysis. Titmarsh GJ, Duncombe AS, McMullin MF, O’Rorke M, Mesa R, De Vocht F, Horan S, Fritschi L, Clarke M, Anderson LA. Am J Hematol. 2014 Jun;89(6):581-7. Erratum AJH 2015;90(9):850.How common are myeloproliferative neoplasms? A systematic review and meta‐analysis (wiley.com)
Environmental, lifestyle, and familial/ethnic factors associated with myeloproliferative neoplasms. Anderson LA, Duncombe AS, Hughes M, Mills ME, Wilson JC, McMullin MF. American Journal of Hematology 2012;87(2):175-82.Environmental, lifestyle, and familial/ethnic factors associated with myeloproliferative neoplasms (wiley.com)
