Frequently Asked Questions
MOSAICC Study Home page
If you have any questions or want more information about the study, please get in touch with the research team by email: firstname.lastname@example.org or email@example.com. We will get back to you as soon as possible.
What does MOSAICC stand for?
MOSAICC is an acronym for MyelOproliferative neoplasmS: An In-depth Case-Control. This study name represents the disease name and also the study design. The MOSAICC study is a UK & Ireland wide study led by Professor Lesley Anderson, University of Aberdeen, Scotland.
What is the purpose of the MOSAICC study?
This study aims to identify what causes MPNs and to assess patients’ quality of life. To do this, we would like to gather some information and biological samples (blood, saliva, and/or toenail) from MPN patients (cases) along with a friend or non-blood relative (of similar age and sex) who does not have the disease. By comparing information from the case and the other person (control), we can learn a lot about myeloproliferative neoplasms
What are myeloproliferative neoplasms (MPNs)?
Myeloproliferative neoplasms (MPNs) are diseases that affect how blood cells are produced in our bodies. Myeloid cells in the bone marrow make too much of one or more types of blood cells (red blood cells, white blood cells and/or platelets) and these additional cells alter the thickness of the blood. The most common types of MPNs are essential thrombocythemia (ET), polycythemia vera (PV) and primary myelofibrosis (PMF). MPNs are classed by the World Health Organization as blood cancers because blood cells are produced by the bone marrow in an uncontrolled way.
What do we know already about what causes MPNs?
Currently there are very few studies which have investigated the causes of MPNs. As MPNs are rare conditions and studies conducted to date have been small, it is very hard to identify any causes. We hope to be able to identify some potential causes of MPNs in this UK and Ireland wide study as it is the most extensive study to date worldwide.
Who can take part? MOSAICC Study?
If you are eligible for the study, your consultant will be in contact with you. Participants must be over 18 years old, have had their MPN diagnosis confirmed within the previous 24 months, and be a registered patient with one of the NHS Trusts/boards involved in the study. Please note that the research team may not include everyone who meets the inclusion criteria as they can only enroll 40 participants from each of the hospitals.
Why are MPN patients who have been diagnosed more than 2 years ago excluded from taking part?
To help us identify the possible causes for MPNs, participants will be asked to recall information about previous jobs and their lifestyle before they were diagnosed with the MPN. As many patients change their lifestyle and potential exposures after diagnosis it is important to only recruit patients that have been recently diagnosed (within the last 24 months).
I want to participate, but I am not eligible; how can I show my support?
It is essential to show our support to one another, and everyone can contribute to this in various ways. You may consider running a fundraiser, arranging an awareness day, or you could donate to the study page to facilitate research on these rare conditions. The research team will be launching a survey asking about how patients were diagnosed and we would value your contribution to this. This will be advertised by MPN Voice.
What does taking part in the MOSAICC study involve?
If you are invited to take part, your participation is entirely voluntary. If you decide to take part in the MOSAICC study, you can consent to take part in all or only part of the study and you can withdraw from the study at any time.
Participants will be asked to provide us with information on their previous jobs and where they have lived. They will then be asked to complete a telephone interview which includes questions on lifestyle and job history, and to complete postal questionnaires about quality of life. Finally, participants will be asked to provide a blood sample, a saliva sample and some toe-nail clippings.
What will the blood sample, saliva sample and toe nail clippings be used for?
The data and biological samples collected will be stored confidentially and DNA/RNA extracted for the advancement of medical knowledge about myeloproliferative neoplasms. All biological samples and study data will be treated confidentially, and it will not be possible for anyone to identify the participants from any of the information or reports produced from this study. The toenail clippings will be used to investigate exposure to factors that may increase a person’s risk of cancer. The big toenails take about a year to grow from base to tip and can give a reflection of previous exposure to carcinogens.
I am receiving different treatment than someone I know with the same condition; I am worried about this, and I need to understand why we are being treated differently for the same condition?
Variation in treatment is expected but you should speak with your consultant or healthcare team. Your consultant will have considered your medical history, the stage of disease and your response to treatments. Your consultant will make an individual assessment and tailor the treatment to fit your condition best. If you have any questions or concerns regarding your treatment you should speak to your healthcare team.
How can I contact the investigators?
If you have any questions or want more information about the study, please get in touch with the research team by email: firstname.lastname@example.org or email@example.com. We will try to get back to you as soon as possible.
Where can I find the results of this study?
The results of the study will be shared on this website. However research can take a long time. We hope to be able share some results with you in the Summer of 2024.
Why are toenails collected?
It takes approximately one year for the big toenails to grow from the root to the tip. The toenails can give information on exogenous (external) exposures to potential carcinogens. A laboratory method, called mass spectrometry, can be used to analyse these samples.
Can I take part without agreeing for my samples to be used in commercial research? / How will my samples be used by commercial research companies?
We will work with a range of partners to explore the causes of MPNs and how to improve treatments for patients. This may include commercial partners. No financial gain will be obtained from the samples you may provide however they may lead to the development of new treatments which may provide financial gain to commercial companies. As stated in the information booklet "Some of the data and samples that you provide may be shared (pseudo-anonymously i.e. without your name or other identifiable information) and/or transferred abroad with collaborators from national and international (i.e. outside of the European Union) research institutions or with commercial companies for further research into myeloproliferative neoplasms."
For this reason the statement below is included on the consent form:
"I agree to confidential storage (i.e. independent of my name and address details) of the following samples which I agree to donate for future research, including genetic analysis, (where DNA/RNA will be extracted) transfer abroad and commercial research. I understand that I will not benefit financially from any research."
You can still participate in the rest of the study if you do not wish any samples donated to be used in this way.
Are MPNs hereditary conditions?
MPNs are predominantly caused by acquired mutations during the lifespan. However, it is possible that there are familial predisposition contributing to the development of MPNs i.e. people may inherit characteristics that make them more likely to acquire mutations that lead to MPNs during their lifetime. Currently, there are limited data on this, and we hope that MOSAICC study will help to identify factors that may increase a persons risk of MPNs.