Masonic Cancer Center

A comprehensive cancer center designated by the National Cancer Institute

AIMMS Study Information

Adults In Minnesota with Myelodysplastic Syndrome (AIMMS) Study

What is the AIMMS Study?
This study was designed to learn more about myelodysplastic syndrome (MDS).
This study is an epidemiology study. Typically, epidemiology studies rely on questionnaires to ask people about personal habits, medical history, and other information. The researchers then look for differences between groups of people who develop disease and those who do not. This state-wide epidemiology study is being conducted by the University of Minnesota, Mayo Clinic, and Minnesota Department of Health. Together we are studying factors that may contribute to the development of MDS in adult Minnesotans. We will be working with approximately 700 MDS patients from 2010 to 2014 and about 700 people without MDS.
Not a lot is known about why some people develop MDS. The goal of this study is to gather information about personal habits, such as smoking and alcohol use, medical history, and environmental and chemical exposures, from people who have been diagnosed with MDS and compare it to the same information gathered from people who do not have MDS. The doctors and researchers hope that by asking very carefully determined questions of people with and without cancer that they might find a common thread among those who developed MDS (this research is called epidemiology). The researchers also plan to study why some people with MDS sometimes develop leukemia and other people with MDS do not.
How did you get my name?
  • For those who have been diagnosed with MDS
    In Minnesota, as in most other states, we have a system that reviews information about all cancer diagnoses. This system is set up to help healthcare providers and researchers learn more about these diseases and how they impact Minnesota residents. Dr. Julie Ross is a researcher at the University of Minnesota who specializes in learning more about diseases of the blood such as MDS and leukemia. She is serving as an agent of the review system to learn more about MDS, and that is how we got your name. We are also working with doctors, nurses, research staff and patient educators at hospitals and clinics who serve Minnesota residents. They are helping us identify patients who may be eligible for the AIMMS study. The staff at hospitals and clinics know all about our study and the study is approved by their ethical review boards at the hospital.
  • For those who have not been diagnosed with MDS
    The names of people who have not been diagnosed with MDS are randomly chosen for the study from lists of people living in Minnesota between the ages of 20 and 85 years.
What will I be asked to do?
  • Participants with myelodysplastic syndrome (MDS)

    You will be asked to complete either a written survey or the same survey over the telephone, whichever you prefer. The questionnaire should take about twenty minutes to complete. Questions will include information related to pesticide and other chemical exposures, medical history, family health history, and personal habits such as smoking and medication use. We will also ask you for your permission to review medical records and biological specimens relating to your MDS diagnosis collected from your clinic, hospital or clinical laboratories. The second, optional portion of the study involves obtaining cheek cell samples. This is typically collected using a saliva collection kit. Alternatively, the cheek cells can be collected by using a soft brush or by collecting a mouthwash rinse.

  • Controls (participants who have not been diagnosed with myelodysplastic syndrome MDS)

    You will be asked to complete either a written survey or the same survey over the telephone, which ever you prefer. The questionnaire should take about twenty minutes to complete. Questions will include information related to pesticide and other chemical exposures, medical history, family health history, and personal habits such as smoking and medication use. The second, optional portion of the study involves obtaining cheek cell samples. This is typically collected using a saliva collection kit. Alternatively, the cheek cells can be collected by using a soft brush or by collecting a mouthwash rinse.

What do I get for doing this?
There is no short-term benefit from these studies. We can offer a small token of appreciation for your time, which is a $10.00 gift certificate to an area business.
 
When will I get the gift certificate?

We will mail your gift certificate within a week or so of receiving your questionnaire.
 
 
What do we hope to gain from this study?
We hope to learn more about the factors that may contribute to the development of MDS. This is done by asking people with MDS about their medical history and about various items they have been exposed to before developing the condition and comparing the information to that collected from people about the same age who do not have MDS. The doctors and researchers hope through very carefully determined questions that they might find a common thread among those who have developed MDS (this research is called epidemiology). 
 
This process is a very common way to start an investigation into the causes of cancer. If we find a common thread, then laboratory scientists will investigate this further to see if there is a biological reason why the particular exposure might be associated with cancer.
 
It must be emphasized that the significance of many of the questions we will ask is unknown. Only by asking questions such as these can we learn whether any of these factors are important in the development of MDS. The result of the study may help us determine whether a reduction or change in environmental factors could contribute to a decrease in the occurrence of MDS. All information collected will be kept strictly confidential. Participation in this study is entirely voluntary. 
Can I receive the study results?
Absolutely. Group results will be available a few years after the study is completed.
How do you keep the information private?
The answers to the questionnaire will be kept separate from your name. The last page of the questionnaire is removed from the survey soon after we get it. The DNA sample is stored with only a number on it. The link between the questionnaire and DNA number and names is kept in a separate file. After the study completed the link between the questionnaire and DNA sample number and the name is destroyed, making the information collected anonymous.
Why do you want DNA samples?
We know that each one of us is different and that we all respond to things in the environment a little differently. The DNA samples will allow us to account for the individual differences such as differences in how the body breaks down toxic chemical agents or how our body processes the foods we eat. We hope to find differences that may be associated with MDS in adults and this may give us more clues into why this cancer happens. It is important to remember that this kind of work is exploratory research. There is no clinical or predictive value to the information and the individual results will not be given to you or your doctor. Group results will be available when the study is complete.
How and why keep/bank the DNA?

This kind of research is fairly new and the methods used to gather information are constantly changing. We will keep the samples so that we can continue to use the most recent tools to gather more information on the risk factors that may be associated with MDS. If at any time you decide you would like your DNA sample destroyed, please call 1-800-470-8636 and let the study staff know.

Why might you want to contact me in the future?

Both personal and family health histories are always changing and sometimes people are unsure or unaware of the information we are asking in the questionnaire. When the study is near completion we would like the opportunity to check back in with you to make sure the information we have is as complete as possible for everyone in the study.

Sponsor:
National Institutes of Health/National Cancer Institute

Researcher in charge of the study:
Julie A. Ross, Ph.D.
Masonic Cancer Center, University of Minnesota
MMC 422 420 Delaware St. SE
Minneapolis, MN 55455

Questions? Call the study staff at the University of Minnesota toll-free at 1-866-434-9879 or email us at MDSStudy@umn.edu.

  • ©2013 Regents of the University of Minnesota. All rights reserved.
  • The University of Minnesota is an equal opportunity educator and employer
  • Last modified on May 16, 2013