Thursday, September 22, 2011
MyChildhoodCancer: The Childhood Cancer Database Survey
When our daughter Alexandra “Alex” Scott was first diagnosed with neuroblastoma, a form of childhood cancer, it would be an understatement to say that our lives were turned upside down. As young parents (we were in our 20’s at the time), we were certainly scared, and part of the reason why was that we simply didn’t know anything about childhood cancer, especially the form Alex had. After walking out of the hospital, we were desperate to find information – we looked through medical textbooks, searched the internet, and tried to find any source of information about the disease that could possibly help as we entered the uncharted territory.
Looking back at that time now, wouldn’t it have been great to have a source of information to go to about neuroblastoma, and all types of childhood cancers. Wouldn’t it have been great if that source of information included the experiences of families prior to diagnosis, during diagnosis, through treatment and beyond? We think the answer is: YES! So, in light of that very fact, Alex’s Lemonade Stand Foundation is pleased to introduce our latest project, MyChildhoodCancer.org - The Childhood Cancer Database.
In an effort to better understand the impact of childhood cancer on families, ALSF’s new project will work to gather data from the source – parents of children with cancer. These family members of former and current childhood cancer patients will be invited to take a series of anonymous surveys about their experience, their child and their family. The hope is that this information can be used to learn about childhood cancers and help organizations (like ALSF!), hospitals and physicians identify and share ways to help families as they move through all the stages of childhood cancer.
At ALSF, we know just how important finding better treatments and ultimately cures for childhood cancer is, and we are as dedicated as ever to funding the best research out there. However, from time to time, we also become aware of other things that might be missing from the childhood cancer world, including data that could lead to new discoveries and make a difference in the day to day lives of families facing the disease, as well as doctors as they look for those treatments and cures. We think this information can have many different uses, all of equal importance, and we hope that many childhood cancer families will contribute!
The database project will be housed at www.MyChildhoodCancer.org, where childhood cancer parents and legal guardians will be met with a survey asking questions about their personal experience with childhood cancer. The first survey in the series is focused on the time period before and early on in a child’s cancer diagnosis. Additional surveys will include experiences leading up to treatment, during and after, as well as how families coped, and are coping in the time following.
For more information on the survey, or for families wishing to participate, visit: www.MyChildhoodCancer.org.
What do you think of this new project?
- Liz and Jay Scott, Alex's parents