TheReasonsWhy™ was created by the parents of Oliver Strong, 12, who died just 36 hours after he was diagnosed with leukemia following a week of headaches.
In partnership with hospitals, cancer research centers and community groups who share our families’ mission to identify TheReasonsWhy™ pediatric cancer strikes us, and TheReasonsWhy™ it is increasing at such an alarming rate, the OFS Foundation (Florida) created in Oliver’s memory is compiling the National Registry in two stages.
First, we are developing a contact database of pediatric cancer families who, because they wish to use their experience to help others to avoid the disease, are in principle willing to share family history information which may be evaluated for possible links to environmental risk factors. A key reason that research has yet to uncover specific exposures that cause childhood cancer simply involves a lack of available data concerning environmental factors that are shared by children who experience cancer.
In effect, our community of like-minded scientists and families (please see below links to our Founders, Partners and Friends) are seeking answers to the first question all families ask upon diagnosis:
“What caused this?”
Second, based on the scientific expertise and experience of leading cancer epidemiologists across the nation, we are developing a comprehensive family history questionnaire incorporating diet, neonatal practices, medications, infections, sports, leisure and other personal activities. To date, these data do not exist from sufficiently large numbers of people to broadly interrogate possible causes, especially for specific types of childhood cancer.
Specifically, we will be building on the work of Dr Michael Scheurer, Associate Professor of Pediatrics at Baylor College of Medicine and Director of Texas Children’s Cancer Center Epidemiology Program. They have been collecting these types of data from their local childhood cancer patients for the past 8 years. He is now working with other investigators to extend this program across the state of Texas. By partnering with this group, we can help expand the investigation into environmental causes of childhood cancers across the United States.
We will be appointing an Institutional Review Board (IRB) and observing all relevant security and privacy protocols under the Health Insurance Portability and Accountability Act (HIPAA) to ensure the privacy and confidentiality of your and your family’s data. Prior to contributing your data you will also have the opportunity to read and sign a consent form that explains the research purposes for which the data will be utilized and the security and privacy protocols that will protect their integrity and confidentiality.
We expect to be able to commence distribution of the Questionnaires to our community of families in early 2017. The information will be consolidated into a database that will constitute the National Registry of Pediatric Cancer Families and be an invaluable resource for scientific research into TheReasonsWhy™.