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Thank you very much for signing up to take part in Baylor College of Medicine’s TheReasonsWhy.Us study into the causes of childhood and teenage cancer. We recognize and thank you for the sacrifice you are making of your time as well as for the significant emotional effort involved.
Our study consists of a series of questions designed to identify potential genetic factors and environmental exposures that might have contributed to a child’s cancer. In order to draw meaningful correlations between certain exposures and cancers, we are aiming to enroll as many participants as possible not only from the USA but globally. Results will be published in scientific journals and shared with government authorities, however, you will remain anonymous. If you are interested in learning more about any publications related to this research you can contact study research staff at the following email: thereasonswhyus@bcm.edu.
We would like to give you an idea what to expect.
You will receive an email from thereasonswhyus@bcm.edu with a link to a web enrollment form for yourself and other participating members of your family.
You and other participating family members will each receive an email from thereasonswhyus@bcm.edu for you to complete a formal consent form. You will receive a copy of the final signed consent forms.
You will receive an email from thereasonswhyus@bcm.edu to confirm your mailing address. Please review and provide the best mailing address to receive study components.
You will receive an email from thereasonswhyus@bcm.edu with the link to the full epidemiological questionnaire, which includes questions about family, diet, neonatal practices, medications, sports, leisure and other personal and consumer activities. You can save your progress at any time and answer only those questions that you choose.
You will receive an email from thereasonswhyus@bcm.edu informing you that we are sending you sample collection kits for the clinical analysis of saliva and baby teeth. Again, if you prefer not to provide the clinical samples, then that is fine!
Why the saliva and why the baby teeth? We are collecting saliva to identify potential correlations between genetic profiles, exposures, and cancers. We are collecting baby teeth to study pre- and postnatal exposures (e.g., heavy metals), in pediatric cancer patients in order to gain a better understanding of how childhood cancers and blood disorders develop.
If you have any questions at any time, please write to us at thereasonswhyus@bcm.edu where a dedicated research coordinator will respond.
Any family with a child that 1) previously had or currently has cancer and 2) was under the age of 21 when they were diagnosed is eligible to participate in the study.
The study does include families of children who may have passed away. First, we’d like to express our deepest condolences. We realize that this must be a tough time for your family. If you would still like to participate in the study, you can. The Enrollment form will ask you about the other members of your family who might be able to participate. If you would prefer not to participate, that’s ok, just let us know.
We’re currently collecting saliva and teeth from children who had/have cancer and saliva from their biological parents. Since we enroll families remotely, it’s critical that all samples of interest remain stable and can be shipped safely. Saliva and teeth meet both of those criteria.
If your child is adopted, your family can still participate in the study. You would not need to submit the saliva samples from the adoptive parents in this case.
We get this question a lot! The short answer is yes, we have another option.
It’s quite common that our families have some issues collecting saliva from certain kids, so we have an assisted collection kit that many parents find useful. The assisted collection kit contains a sponge-like device that is swabbed around the mouth and requires a little less volume. Many families find this method easier than the traditional saliva kit!
If you think your situation would benefit from an assisted collection kit, simply let us know.
If you have additional information you’d like to provide, we’d love to hear it! The online questionnaire includes comment sections throughout so that participants can clarify answers or provide more details if needed. If any questions are unclear, feel free to reach out to us by phone or email for clarification.
In addition, there is a question at the end of the survey that asks “Are there any other factors that you think could have contributed to the patient’s cancer/condition?” If you answer Yes, you will be able to provide as much detail as you’d like.
We are not currently enrolling siblings on this study. When we begin to enroll siblings at a later date, we’ll reach out to you again.
Simply give us a call at 1-855-474-4520 or send an email thereasonswhyus@bcm.edu Someone is in the office each day during the week and will respond as soon as possible. Please note that we are located in the Central US Time Zone, and our office hours are generally 8AM to 5PM local time.
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