Frequently Asked Questions for parents of children who have Wilms tumor and related conditionsWhat – The North American Wilms Tumor Study is a population study to identify the causes of Wilms tumor, by analyzing health and lifestyle information about children who have been diagnosed with Wilms tumor and their parents, and comparing this to children without cancer. The goal of this study is to contribute to prevention of Wilms tumor in the next generation.
Why – While we know that genetic and environmental factors have a role in cancer development, there is still very little known about the causes of cancer in infants and children. So the researchers at the Children’s Oncology Group (COG) and Mount Sinai Hospital are conducting this study to understand the causes of Wilms tumor.
Who – The study population will include approximately 840 families like yours across North America who have consented to be contacted for research studies with the COG Children’s Cancer Research Network (CCRN).
Where – Participants are being invited from over 200 children hospitals all across the US and Canada.
How – If you participate, we would ask for 3 things. No direct involvement of the child is required. Each level is optional, and you may choose to take part in some or all of the levels:
1) We would ask the parents to complete study surveys over the phone: There will be 3 interviews, one for the mother, one for the father, and one for the primary care taker of the child. The interviews vary in lengths, and each takes 20 minutes and up to 1 hour to complete.
2) We would collect some saliva sample from the parents: Self-collection saliva kits will be mailed to your home address. There are easy-to-follow instructions to collect a small saliva sample from each parent. Samples can be sent back to the researchers using a pre-paid return mailer. This part takes no more than 5 minutes to complete.
3) We would collect medical records of your child.
What do I get for doing this?
The results from this study will help the medical community to understand better why Wilms tumor occurs, which will then help to prevent its occurrence. In addition, your family will receive a $25 gift card to thank you for participating in this study.
Can I receive the study results?
Absolutely. Group results will be available a few years after the study recruitment is completed. When the interviewer calls you for your telephone interview, let him/her know that you would like to receive the study results.
Is it secure to provide consent online?
All personal information collected on the study website will be stored on a secure server monitored by Mount Sinai Hospital. Access to this information will be limited to key project personnel, and the information will be transferred regularly to a backup server with limited access. All information collected will be encrypted en route as well as on the storage server to ensure that any intercepted data cannot be decoded and that individual responses cannot be traced back to an individual respondent. Storage, maintenance, and destruction of information collected on the study website will be carried out with the same standard as information collected in hard copies.
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