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***PLEASE READ***
Be The Match (BTM) is a national organization that helps patients with blood cancers find a bone marrow or peripheral blood stem cell (PBSC) "match" from an unrelated donor when they are in need of a life saving transplant. In order to do this, Be The Match holds registry events. At these registry events, people who are willing to donate swab their cheek and fill out paperwork in order to become a potential donor.
Joining the registry does NOT mean that you will be a donor, by joining the registry you have about a 1 in 540 chance of being someone's "match." After signing up you will be on the registry until you are 61 or until you ask to be taken off, however, Be The Match hopes that every person who joins the registry would be willing to donate. The two ways that individuals added to the Be The Match registry can donate will be explained later in this survey.
The purpose of this survey is to understand people's concerns about donating bone marrow or PBSC, and why they do not elect to join the registry and/or choose to donate if they are a match.
This survey is completely voluntary and is sponsored by Be The Match. By proceeding, you indicate your willingness to participate. |
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| Question #1: Which of the following best describes your gender? |
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| Question #2: Which of the following age ranges do you fit in? |
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| Question #3: What is your race/ethnicity? |
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| Question #4: Which of the following best describes your knowledge of Be The Match?
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| Question #5: Which of the following best describes you? |
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| Question #6: To the best of your knowledge are you currently on the Be The Match registry? |
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| Question #7: What is the first word(s) that comes to mind [positive or negative] when you think about bone marrow donation? | | |
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| Question #7: What is the first word(s) that comes to mind [positive or negative] when you think about bone marrow donation? | | |
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| Question #8: If you were matched with a patient and were asked to donate bone marrow or peripheral blood stem cells (PBSC) how likely would you be to accept and donate?
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| Question #8: If you signed up for the registry, were matched with a patient, and were asked to donate bone marrow or peripheral blood stem cells (PBSC) how likely would you be to accept and donate?
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| Question #9: What would the main reason for declining be if you were asked to donate? | | |
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| Question #9: What would the main reason for declining be if you were on the registry and were asked to donate? | | |
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| Question #9: In your opinion, do you believe it is important that people who sign up for the registry follow through and donate? Why or why not? | | |
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| Question #9: In your opinion, do you believe it is important that people who sign up for the registry follow through and donate? Why or why not? | | |
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The average time commitment for donors is 20-30 hours total over a 4-6 week period.
Question #10: State below how much you agree or disagree with the following statement:
The time commitment, as described above, would deter me from donating if I were a match.
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The average time commitment for donors is 20-30 hours total over a 4-6 week period.
Question #10: State below how much you agree or disagree with the following statement:
The time commitment, as described above, would deter me from donating if I signed up for the registry and matched with a patient.
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Donation happens one of two ways. A physician determines the process used based on what is best for the patient and the donor. Be The Match will cover the cost of any medical procedures or travel expenses that are expected of the donors.
(1) Bone marrow donation is a surgical procedure that takes place in an operating room. The donor is normally given general anesthesia and is unconscious during the procedure. The bone marrow is then taken from the pelvic bone using a hollow needle (no stitches are required). Most donors are able to go home that same day or the next morning.
(2) Peripheral blood stem cell (PBSC) donation is a process that begins with the donor receiving injections of a medicine at a donor center/medical clinic in order to move more blood-forming cells from your bone marrow to your bloodstream. The PBSC donation is done through apheresis (similar to donating plasma) where blood is removed from a vein in one arm and passed through tubing into a blood separator machine to remove the blood forming cells, and the remaining blood is placed in the opposite arm. This process will either take place on one day for 8 hours or 2 days for 6 hours each day.
For more information on the donation process, visit bethematch.org/ (FAQs about joining)
Question #11: State below how much you agree or disagree with the following statement:
The process of donation, as described above, would deter me from donating if I were to sign up for the registry and match with a patient.
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Donation happens one of two ways. A physician determines the process used based on what is best for the patient and the donor. Be The Match will cover the cost of any medical procedures or travel expenses that are expected of the donors.
(1) Bone marrow donation is a surgical procedure that takes place in an operating room. The donor is normally given general anesthesia and is unconscious during the procedure. The bone marrow is then taken from the pelvic bone using a hollow needle (no stitches are required). Most donors are able to go home that same day or the next morning.
(2) Peripheral blood stem cell (PBSC) donation is a process that begins with the donor receiving injections of a medicine at a donor center/medical clinic in order to move more blood-forming cells from your bone marrow to your bloodstream. The PBSC donation is done through apheresis (similar to donating plasma) where blood is removed from a vein in one arm and passed through tubing into a blood separator machine to remove the blood forming cells, and the remaining blood is placed in the opposite arm. This process will either take place on one day for 8 hours or 2 days for 6 hours each day.
For more information on the donation process, visit bethematch.org/ (FAQs about joining)
Question #11: State below how much you agree or disagree with the following statement:
The process of donation, as described above, would deter me from donating if I were a match.
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Be The Match is the recognized leader in unrelated marrow transplantation, because of this individuals who sign up for the registry should be prepared and willing to donate to a patient that they do not know.
Question #12: State below how much you agree or disagree with the following statement:
If I signed up for the registry and matched with a patient that is not related to me I would be willing to donate.
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Be The Match is the recognized leader in unrelated marrow transplantation, because of this individuals who sign up for the registry should be prepared and willing to donate to a patient that they do not know.
Question #12: State below how much you agree or disagree with the following statement:
I would be willing donating to someone that I do not know.
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| Question #13: What type of information, if any, would be influential in making you want to learn more about joining the Be The Match registry?
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| Question #13: What information, if any, was/would have been influential in making you want to learn more about joining the Be The Match registry when you signed up?
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| Question #14: Please elaborate on any thoughts you have overall about the Be The Match registry and donation. This can include, but is not limited to:
(a) If you are interested in signing up for the Be The Match registry what is the main reason that compelled you to this decision?
(b) What hesitations, if any, do you have or do you think that someone else would have about signing up for the Be The Match registry or about donating?
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| Question #14: Please elaborate on any thoughts you have overall about the Be The Match registry and donation. This can include, but is not limited to:
(a) What was/is the main reason that compelled you to sign up for the registry?
(b) What hesitations, if any, do you have or do you think that someone else would have about signing up for the Be The Match registry or about donating?
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| Question #15: Are you interested in receiving a follow up email that will contain more information about Be The Match registry and donating? |
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| Question #15: Are you interested in receiving a follow up email that will contain more information about Be The Match registry and donating as well as being added into the drawing for a $15 Starbucks gift card? |
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| Email Address
By listing your email you will receive ONE follow up email with more information about the Be The Match registry and donating (you will NOT be added to any email lists) and you will be added into the drawing for a $15 Starbucks gift card.
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| Feel free to list any specific questions that you would like to be answered in this follow up email. | | |
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