Why We Must Share Research and Resources

October 5, 2021

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When my daughter Alex was diagnosed with cancer and throughout her battle, we saw how our community of people rallied around our family. No one knew quite how to help, but they were willing to do whatever was needed to ease the burden we faced. And later when Alex started her lemonade stand, we witnessed how people wanted to give. They wanted to help in the most ultimate way — by helping to find cures for all kids with cancer. The belief that families, companies, and communities can come together to contribute to curing childhood cancer is not just a sweet idea, it is a requirement to achieve new cures for kids as quickly as possible. This idea extends to our funded researchers in the childhood cancer community as well. For years we have provided unique opportunities for researchers to network and share ideas through our annual researcher summits and have provided easy ways for them to rally support for research through our Million Mile challenge.

We are seeing real progress from our collective efforts! The progress is exciting and we have never felt more optimistic about what lies ahead, but there is still work to be done. We believe that effective sharing will lead to the faster discovery of new cures and will ultimately change the future for children with cancer. It is why we are committed to pushing our community to be the best it can be through our newer research initiatives at Alex’s Lemonade Stand Foundation (ALSF) such as the Crazy 8 Initiative and the Childhood Cancer Data Lab. Both initiatives encourage, require, or facilitate collaboration and sharing of discoveries and resources. But the sharing of critical findings and resources must extend beyond these two initiatives.  

Why Sharing Matters

Sharing is the foundation of collaboration in science and allows researchers to build upon the work of one another.

Robust resource sharing benefits the communities we are dedicated to: the children and families battling pediatric cancer and the researchers who devote their lives to finding cures. Sharing resources will accelerate progress to help both of these groups. Researchers that share data and materials to publicly available repositories are maximizing the use of available data, minimizing the time spent recreating already existing work, and opening up new opportunities for discovery.

Why is it important to us? Because it is vital to finding new cures as quickly as possible for kids. We must ensure that childhood cancer researchers can reap the benefits of sharing and gain access to critical resources that will advance their work. So, what are we doing about it?

How ALSF Supports Sharing

ALSF promotes resource sharing through grant policies, training sessions, special awards, and the tools we offer to the childhood cancer research community.

  1. Since 2018, we have required grant applicants to submit a resource sharing plan as part of their grant application. We want to know how researchers have successfully shared in the past and how they are prepared to share the outputs of their proposed project. This plan is scored during the review process and is a consideration when choosing which projects to fund. It has been interesting to note that often the most accomplished and best scored researchers also have the best track record of sharing — so the belief that sharing can “hurt your career” appears to be an antiquated approach to defining success.
  2. Funded researchers report against their resource sharing plans in each progress report. These are then evaluated by our Scientific Advisory Board to understand the impact of resources produced through the project and to ensure that our researchers are contributing their findings to the community.
  3. Recently, ALSF launched the Childhood Cancer Research Resources (CCRR) Portal. The CCRR Portal simplifies the process of sharing and requesting resources through a repository or laboratory. It will further enable discoverability of childhood cancer resources such as cell lines, data sets, plasmids, and more. Users who share resources through the portal are helping to build a community that will lead to more collaborations and discoveries, while increasing the visibility of their work and demonstrating the impact of their research. The process of discovering and requesting a resource through the portal is fast, easy, and trackable. We encourage researchers to visit the new CCRR portal and learn more about the benefits of sharing and requesting resources using this free, openly available tool.
  4. ALSF has funded the Childhood Cancer Repository, a resource laboratory of the Children’s Oncology Group, since 2014. The repository stores and cultivates patient-derived xenografts (PDXs) and cell lines. It has distributed validated cell lines and PDXs to childhood cancer researchers across the country and abroad. The cell lines are provided for free to researchers. (Okay, they need to pay for shipping. 😊)
  5. ALSF’s Childhood Cancer Data Lab holds training workshops to teach researchers the data science skills they need to examine their own data. Through their workshops, the Data Lab has shared knowledge and tools with approximately 150 participants to date. All training materials and software are publicly available and openly licensed.
  6. We celebrate the grant recipients who provided the best resource sharing plans with special grant awards in partnership with Northwestern Mutual at our Young Investigator Summit each year.

It is encouraging to see the sharing that takes place in our wonderful community of people dedicated to finding new cures for kids with cancer. We applaud childhood cancer researchers who share effectively for being drivers of progress!  We remain committed to doing our part to strengthen scientific sharing practices, so that sharing is easier and more accessible to researchers worldwide.

We know that to deliver on the vision that Alex gave us — cures for all kids with cancer — we must come together, one cup and one discovery at a time.

When my daughter Alex was diagnosed with cancer and throughout her battle, we saw how our community of people rallied around our family. No one knew quite how to help, but they were willing to do whatever was needed to ease the burden we faced. And later when Alex started her lemonade stand, we witnessed how people wanted to give. They wanted to help in the most ultimate way — by helping to find cures for all kids with cancer. The belief that families, companies, and communities can come together to contribute to curing childhood cancer is not just a sweet idea, it is a requirement to achieve new cures for kids as quickly as possible. This idea extends to our funded researchers in the childhood cancer community as well. For years we have provided unique opportunities for researchers to network and share ideas through our annual researcher summits and have provided easy ways for them to rally support for research through our Million Mile challenge.

We are seeing real progress from our collective efforts! The progress is exciting and we have never felt more optimistic about what lies ahead, but there is still work to be done. We believe that effective sharing will lead to the faster discovery of new cures and will ultimately change the future for children with cancer. It is why we are committed to pushing our community to be the best it can be through our newer research initiatives at Alex’s Lemonade Stand Foundation (ALSF) such as the Crazy 8 Initiative and the Childhood Cancer Data Lab. Both initiatives encourage, require, or facilitate collaboration and sharing of discoveries and resources. But the sharing of critical findings and resources must extend beyond these two initiatives.  

Why Sharing Matters

Sharing is the foundation of collaboration in science and allows researchers to build upon the work of one another.

Robust resource sharing benefits the communities we are dedicated to: the children and families battling pediatric cancer and the researchers who devote their lives to finding cures. Sharing resources will accelerate progress to help both of these groups. Researchers that share data and materials to publicly available repositories are maximizing the use of available data, minimizing the time spent recreating already existing work, and opening up new opportunities for discovery.

Why is it important to us? Because it is vital to finding new cures as quickly as possible for kids. We must ensure that childhood cancer researchers can reap the benefits of sharing and gain access to critical resources that will advance their work. So, what are we doing about it?

How ALSF Supports Sharing

ALSF promotes resource sharing through grant policies, training sessions, special awards, and the tools we offer to the childhood cancer research community.

  1. Since 2018, we have required grant applicants to submit a resource sharing plan as part of their grant application. We want to know how researchers have successfully shared in the past and how they are prepared to share the outputs of their proposed project. This plan is scored during the review process and is a consideration when choosing which projects to fund. It has been interesting to note that often the most accomplished and best scored researchers also have the best track record of sharing — so the belief that sharing can “hurt your career” appears to be an antiquated approach to defining success.
  2. Funded researchers report against their resource sharing plans in each progress report. These are then evaluated by our Scientific Advisory Board to understand the impact of resources produced through the project and to ensure that our researchers are contributing their findings to the community.
  3. Recently, ALSF launched the Childhood Cancer Research Resources (CCRR) Portal. The CCRR Portal simplifies the process of sharing and requesting resources through a repository or laboratory. It will further enable discoverability of childhood cancer resources such as cell lines, data sets, plasmids, and more. Users who share resources through the portal are helping to build a community that will lead to more collaborations and discoveries, while increasing the visibility of their work and demonstrating the impact of their research. The process of discovering and requesting a resource through the portal is fast, easy, and trackable. We encourage researchers to visit the new CCRR portal and learn more about the benefits of sharing and requesting resources using this free, openly available tool.
  4. ALSF has funded the Childhood Cancer Repository, a resource laboratory of the Children’s Oncology Group, since 2014. The repository stores and cultivates patient-derived xenografts (PDXs) and cell lines. It has distributed validated cell lines and PDXs to childhood cancer researchers across the country and abroad. The cell lines are provided for free to researchers. (Okay, they need to pay for shipping. 😊)
  5. ALSF’s Childhood Cancer Data Lab holds training workshops to teach researchers the data science skills they need to examine their own data. Through their workshops, the Data Lab has shared knowledge and tools with approximately 150 participants to date. All training materials and software are publicly available and openly licensed.
  6. We celebrate the grant recipients who provided the best resource sharing plans with special grant awards in partnership with Northwestern Mutual at our Young Investigator Summit each year.

It is encouraging to see the sharing that takes place in our wonderful community of people dedicated to finding new cures for kids with cancer. We applaud childhood cancer researchers who share effectively for being drivers of progress!  We remain committed to doing our part to strengthen scientific sharing practices, so that sharing is easier and more accessible to researchers worldwide.

We know that to deliver on the vision that Alex gave us — cures for all kids with cancer — we must come together, one cup and one discovery at a time.

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