You are invited to participate in a study conducted by researchers at the National Institutes of Health and the Johns Hopkins University Bloomberg School of Public Health.
Why is this study being done?
To learn more about how men who are diagnosed with
prostate cancer deal with the disease.
We are interested in hearing from men who may still be
learning to deal with the diagnosis and related symptoms,
as well as men who are not very bothered by the diagnosis or symptoms.
We are interested in perspectives from men at any time after diagnosis,
whether or not they have received treatment.
Who can take part in this study?
You can take part in this study if you answer YES to all of the following:
- I have been diagnosed with localized (non-metastatic) prostate cancer of stage T1b, T1c, T2a, T2b, or T2c.
- I was between 18 and 70 years of age when I was diagnosed with prostate cancer.
- I have never been diagnosed with any other cancer, OR I have never been diagnosed with any cancer except for skin cancer that was not melanoma.
What is involved in this study?
There is one survey that takes approximately 45 minutes to complete.
It asks about your thoughts and feelings about having prostate cancer,
how it has affected your life, and how you have been dealing with the diagnosis
and/or the effects of treatment. The survey is divided into three sections.
If you decide to participate but do not have time to complete all sections at once,
you may return to the survey later to answer the remaining questions.
There are no known risks of taking part in this study. If taking the survey makes you feel uncomfortable, you can stop taking the survey at any time. If it causes you to become upset or worried, you can also contact the researchers (see below) and they will help direct you to the appropriate resources.
Are there benefits to taking part in the study?
You will not personally receive any benefits from taking part in this study.
We are interested in learning more about how men deal with the experience of prostate cancer, and
we hope to pass that understanding on to help men with prostate cancer in the future.
Do I have to participate?
No, you do not have to take part in this study if you do not want to.
Your decision to take the survey will not affect your healthcare.
If you begin the survey, you can choose to skip any question that you do not want to answer.
You can also stop taking the survey at any time.
If you finish the survey and then change your mind,
we will not be able to delete your responses because the surveys are all anonymous.
Who else will know that I am in this study?
We do not ask for your name or contact information on this survey.
If you provide us with your name by calling or writing to us,
we will not link your name with your responses.
This study will not be part of any medical record.
When we report our research results, it will be
done without participants' identifiable information.
How do I participate?
To complete the survey online, please click on the Login tab on the left side of your screen.
If you are taking this survey online, please consider printing
a copy of this consent form so that you have the researchers' contact information.
If you prefer to complete a paper version of the survey,
please contact Sarah Kalia at (301) 443-2634 or kalias@mail.nih.gov.
Please indicate your mailing address in your message.
We will send you the survey and a pre-addressed, stamped return envelope.
Any contact information you give to the researchers will be immediately destroyed
after the survey is mailed.
Thank you for your interest and time. If you know of other men
who may be eligible to participate, please consider letting them
know about this study.
Sincerely,
| Sarah Kalia | Anne C. Madeo |
| Associate Investigator, JHU/NHGRI | Principal Investigator, JHU/NHGRI |
| Genetic Counseling Training Program | Genetic Counseling Training Program |
| (301) 443-2634 | (301) 443-2635 |
| kalias@mail.nih.gov | Anne.Madeo@mail.nih.gov |