CBTN Needs Your Help to Put Kids First Again
The Gabriella Miller Kids First Pediatric Research Act was passed in 2013 by Congress to ensure that research, drug development, data collection, and general funding were a priority when it comes to scientific research of childhood cancer and structural birth defects. This important resource makes collaboration possible for both the research and patient communities, and funds a variety of programs that put "Kids First." It was designated as a 10-year program administered by the National Institutes of Health (NIH) Common Fund. From this Act, the Kids First Data Resource Center was created to mange patient molecular and clinical data.
The Center for Data Driven Discovery in Biomedicine at the Children's Hospital of Philadelphia, which also serves as the Operations Center for the Children's Brain Tumor Network (CBTN), was selected with collaborators by the NIH to be the Data Resource Center and build and maintain the Kids First Data Resource Portal, a centralized, cloud-based data portal that provides access to clinical and genomic sequence data from dozens of childhood cancer and structural birth defects cohorts, which represent thousands of patients and their families.
Creating such an ambitious ecosystem to collect, store, analyze, and share multi-modal data through the Kids First Portal has been a monumental undertaking by CBTN and fellow Kids First Data Resource Center members. But, this investment has paid off in a big way. At this time, it includes more than data from 30,000 genomes across the pediatric cancer and structural birth defect landscape. More than 93,000 samples have been used to generate DNA and RNA data that is paired with imaging, and clinical data, all made available to freely empower collaborative research.
Now that the resources are fully in place and being accessed by thousands of users, an explosion of scientific discovery is primed. However, the decade-long commitment to put kids first ends soon. This means that funding for the NIH Kids First Data Resource Center will expire if Congress does not act quickly to pass The Gabriella Miller Kids First Pediatric Research Act 2.0.
Legislative inaction would bring devastating impacts
Without passage of the 2.0 renewal act, America loses the only pediatric cancer and structural birth defects research database of its kind. The brilliant community of researchers that rely on this vast data resource to inform progress toward cures will experience irreparable harm. CBTN will lose capacity to further breakthrough collaborative research and life-saving precision medicine. Instant cross-disease research that leads to new discoveries will no longer be attainable. And, researchers everywhere will be shut out of the vital NIH data landscape of pediatric clinical, biospecimen, and molecular information so critical to advancing research.
In fact, if this initiative goes without funding for even a year or two, it will set the Kids First Data Resource Center back a decade or more because of how fast data is generated in today’s genomic research environment. The impacts are enormous:
- $126 million already invested in this successful, one-of-a-kind resource will be WASTED.
- The Kids First Data Resource Center, already used by more than 3,200 users with 500 research requests approved to further research for childhood cancer and structural birth defects, will be DISCARDED.
- Critical funding that CBTN needs to fulfill its mission will be CUT OFF.
- The opportunity to create an initiative like this one is UNLIKELY.
- Researchers would once again be forced to analyze adult data to study and treat kids’ diseases BLINDLY.
- Potential for effective personalized medicine that can save lives becomes greatly DIMINISHED.
The good news is that momentum is on the side of the Kids First coalition. More than 50 Congressional members have recognized the importance of funding this bipartisan bill through sponsorship. But that isn’t enough to save Kids First. If Senate leaders choose to not include this bill in its end-of-year appropriation package, Congress won’t get the chance to vote “yes” and renew the Gabriella Miller Kids First Pediatric Research Act 2.0. Unimaginably, there may never be another opportunity for such an open and collaborative data resource from which to develop more effective treatments and cures.
These few key Senators — Schumer, McConnell, Murray, and Burr — have the power to move the bill forward. They must ensure it does. After all, the lives of hundreds of thousands of sick kids and their families hang in the balance. For more about the Kids First Data Resource Center, click HERE.
Tweet to Put Kids First!
Make your voice heard! You’re invited to participate in a nationwide 5-day social media outreach effort to select Senators and HELP committee members to include Kids First 2.0 as part of the year-end bill package and pass it as requested.
Let’s make sure the Gabriella Miller Kids First Pediatric Research Act 2.0 continues to help sick kids find the treatments and cures they need to thrive.
Here you’ll find two options for suggested language to cut, paste, and Tweet over five days. OPTION 1 suggests that you record a video message to share along with your Tweets. OPTION 2 sets up the opportunity to share an image of a beloved child that has experienced childhood cancer or structural birth defect.
OPTION 1: VIDEO MESSAGE
- Record your video message using your smart phone or computer camera. Call on Congress to include the Gabriella Miller Kids First Pediatric Research Act 2.0 act in their end-of-year package.
- Select the link below on each day
- Copy the entire tweet into your Twitter account and send.
Here are 5 Tweets. Send one each day for 5 days.
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DAY 5
OPTION 2: CHILD’S IMAGE
- Upload a child’s image as noted in the tweet below
- Select the version of copy appropriate for your situation. Copy the entire tweet into your twitter program and send.
Here are 5 Tweets. Send one each day for 5 days.
DAY 1
DAY 2
DAY 3
DAY 4
DAY 5