What is the PALM Study?

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 statewide epidemiology study is being conducted by the Mayo Clinic, University of Minnesota, and the Minnesota Department of Health. Together we are studying factors that may contribute to the development of leukemia in adult Minnesotans.

How did you get my name?

For those who have been diagnosed with leukemia

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 the impact Minnesota residents. Dr. Julie Ross is a researcher at the University of Minnesota who specializes in learning more about leukemia. She is serving as an agent of the review system to learn more about myeloid leukemia, 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 PALM study. The staff at the 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 leukemia

The names of people who have not been diagnosed with leukemia are randomly chosen for the study from lists of people living in Minnesota between the ages of 20 and 79. How many people will be involved with the study? We will be working with approximately 700 myeloid leukemia patients diagnosed from 2005 to 2010 and about 700 people without leukemia.

What will I be asked to do?

Participants with leukemia

You will be asked to complete either a written survey or the same survey over the telephone, whichever you prefer. The questionnaire should take less than 1 hour to complete. Most people have completed the questionnaire in less than a half hour. 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 a leukemia slide at the time of diagnosis.

A second, optional portion of the study involves obtaining a small sample of cheek cells. The cheek cells are gathered by using a soft brush and rubbing the inside of the cheek or by collecting a mouthwash rinse. If you prefer, we can obtain one small extra tube of blood (about 1 teaspoon) during a routine blood draw (no extra needle stick is required). We can send a kit to you that you can take in with you to your next appointment.

Controls (participants who have not been diagnosed with adult leukemia)

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 less than 1 hour to complete. Most people have completed the questionnaire in less than a half hour. 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.

A second, optional portion of the study involves obtaining a small sample of cheek cells. The cheek cells are gathered by using a soft brush and rubbing the inside of the cheek or by collecting a mouthwash rinse.

What do I get for doing this?

We are offering a small token ($10 gift certificate) in appreciation of your time. What kind of gift certificates do you have? We have gift certificates to Target, Cenex, British Petroleum/Amoco, Dairy Queen or a phone card. Just mark your preference on the last page of the questionnaire.

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 leukemia. This is done by asking people with leukemia 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 leukemia. The doctors and researchers hope through very carefully determined questions that they might find a common thread among those who have developed leukemia (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 adult leukemia. 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 adult leukemia. 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 a number on it only. The link between the questionnaire and DNA number and names is kept in a separate file. After the study the completed the link between the questionnaire and DNA sample numbers and the names 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 chemicals agents or how our body processes the foods we eat. We hope find differences may be associated with leukemia in adults and this may give us more clues into why leukemia happens. It is important to remember that this kind of work is exploratory research. There is no clinical or predictive value to the information so 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 do you 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 leukemia. 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?

Health histories (both personal and family health histories) are always changing and sometimes people are unsure 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 as complete as possible for everyone in the study.

What if I have questions?

If you have any questions you can reach study staff at 1-866-434-9879, toll-free.