Copy
View this email in your browser

CBTN FOUNDATION PARTNERS REPORT-OUT
NOVEMBER 2020

To our CBTN partners,

We are excited to introduce you to two new members of the team;
Gerri Trooskin, our new Director of Partnerships and Whitney Rife, our new Outreach Project Manager. We hope you’ll join us in welcoming them to our team!

Ms. Trooskin will lead efforts for new programs to increase engagement across CBTN member sites,  commercial and academic partners, government agencies, foundations and donors, and patients and research advocates. Ms. Trooskin comes to us from the Franklin Institute where she was the Director of Museum Programs and Outreach Activities and successfully increased engagement in the Institute while generating significant financial support. These activities will be key to supporting the CBTN’s mission, vision, and FY21 goals. 

Ms. Rife will be the point person for the CBTN communications team, working directly with Bobby and Jonathan while managing timelines and workflows for projects, programs, and initiatives. The goal is to increase outreach communications to support the CBTN’s vision and mission while empowering you all in your community efforts. Ms. Rife comes to us from commercial marketing efforts with a successful 12 year career. 

During our November one-on-one calls with foundation partners, you will have an opportunity to meet and ask questions of Gerri and Whitney. 

The CBTN leadership team is
grateful to the Swifty Foundation in supporting these positions to move the CBTN forward during these trying financial times.

We are elated for the launch of the new CBTN website! Many thanks to all of you who worked with us to refine the site and help us launch Version 1. Please note the feedback feature will remain on the site and we hope you and your community stakeholders continue to provide suggestions. The team is on track to launch Version 2 in the December/January time frame, which will include expanded information about our foundation partners, community presentations, institutions, and more. 

As a reminder, we encourage you to share the newsletter subscription link with your personal networks so we can continue to inform the community of the work being done by investigators and patient advocates on behalf of children with brain tumors.

Please find the report for October below. 

-CBTN Executive Committee
CBTN RESEARCH CORE UPDATES

CBTN SITE STATUS

Goal: is to increase membership to create the largest pediatric brain tumor resource, with representation across all histologies.

CBTTC now has 25 member sites with the U.S., Australia, Europe, and China represented globally! 7 of those 25 sites are all in varying stages of onboarding. Onboarding includes execution of our master agreement, regulatory approval, training, and the collection of certifications. Our policy is to officially announce a new site once they have executed the agreement and have approved regulatory documents. 

As noted previously, if you identify a hospital that would like to join CBTN, please contact us. We can reach out, provide a background of the consortium and then steps to apply. 


Total Number of Sites (internationally): 25* 
listing of all sites can be found at:
https://cbtn.org/institutions
* 18 sites have fully completed regulatory review and site agreement process

New Site Applications in Progress (not yet submitted): 0
New Site Applications: 0
New Sites Recently Approved and Onboarding: 7

  • NYU/Langone Children’s Hospital - Core Member
    • On-boarding Status: Agreement executed, regulatory review in progress
  •  Arnold Palmer Children’s Hospital - Data Satellite
    • On-boarding Status: Agreement executed, regulatory review in progress
  • University of Michigan/CS Mott Children’s Hospital - Data Satellite
    • On-boarding Status: Agreement executed, regulatory review in progress
    St. Louis Children’s - Data Satellite
    • On-boarding Status: Agreement executed, regulatory review in progress
  • Sydney Children’s - Specimen Satellite
    • On-boarding Status: Welcome email was sent and on-boarding begins!
  • University Children's Zürich: Specimen Satellite
    • On-boarding Status: Welcome email was sent and on-boarding begins!
    Doernbecher Children's Hospital - Specimen and Data Satellite
    • On-boarding Status: Welcome email was sent and on-boarding begins!

If you have interest in assisting one of our already existing sites or those now on-boarding, please let us know! Many sites have informed us of what they expect to be upcoming shortfalls for research funding due to COVID-19. We thank all that have donated to CBTN COVID relief needs to ensure all of the CBTN sites continue to move forward full steam this year.

CBTN ENROLLMENT

Goal: is to increase membership to create the largest pediatric brain tumor resource, with representation across all histologies.

CBTN consents children and biological parents for participation. For patients, medical information about their brain tumor is collected, as well as biospecimens. For biological parents, only a biospecimen is collected; normally saliva. This is a sample collection that can be done at home and mailed in. Having the family participate is extremely important for research efforts.

  • Total Number of Sites: 25*
    • *18 have been fully on-boarded
  • Overall Total Enrolled
    • All-Time: 4,762
    • FY21: 133
  • Total Children Enrolled
    • All-Time: 3,663
    • FY21: 118
  • Total Mothers Enrolled
    • All-Time: 616
    • FY21: 9
  • Total Fathers Enrolled
    • All-Time: 483
    • FY21: 6
CBTN RESEARCH RESOURCES:

The CBTN collects, manages, and distributes longitudinal clinical data, biospecimens, pre-clinical models, genomic, proteomic, and other data generated from the collected biospecimens. These resources are available for any investigator to request. 

The following is a breakdown of some of the major histological groups (however, more is available). As you all talk with researchers, please let them know these resources are available for their research. All of these have longitudinal clinical data, and as funds become available we generate genomic data, proteomic data, and pre-clinical models. If you have an interest in supporting data generation or pre-clinical model development and drug testing for a specific histology, please let us know. Generation of data and pre-clinical models are critical as they are non-consumptive (unlike biospecimens) and can be used by anyone as many times as needed.

This information will be provided going forward on our website.
You can query the available data here: 
https://portal.kidsfirstdrc.org/dashboard.

Histology    |   Number of Subjects Enrolled with this Diagnosis
  • ATRT - 100
  • DMG - 143
  • Medulloblastoma - 447
  • Low Grade Glioma - 1,022
  • High Grade Glioma - 356
  • Ependymoma - 330
  • Craniopharyngioma - 130
  • Dysembryoplastic Neuroeithelial Tumor (DNET) - 80
  • Ganglioglioma - 189

FINANCIAL UPDATES:
We will be following up shortly with the current projected budget plan for the current fiscal year covering July 1, 2020 through June 30, 2021 and the projected budget for fiscal year FY22 which begins July 1, 2021 and ends June 30, 2022. As we discussed on our calls and provided in the reports, CBTN is required to secure the funding for the upcoming fiscal year by the end of the current fiscal year to be able to award the CBTN sites their subcontracts.

Through all of the COVID relief efforts we are happy to report that this FY21 budget is funded with the ability to increase funding for Stanford as they exceeded their performance metrics. This was an amazing effort by all to maintain the vision and mission of CBTN.

We are sorry to say that it does seem the COVID will be continuing to affect our fundraising efforts this fiscal year. Currently for FY22 we have raised  a projected $90,000 of the estimated 1.2m required. Ms Trooskin and Jena are currently working with CBTN leadership on sustainable funding strategies while ensuring the short term financial needs are met through federal funding, new strategic partnerships, and the new CBTN membership levels.


Budget Q&A
What are the budget expenses for CBTN? 

  • CBTN Operations Personnel/ Sites Personnel/ Lab supplies/ Communications and Meetings

What are the funding sources for CBTN and how are they monitored? 

  • Institutional support from CHOP, Federal and Philanthropic Funding

What is CBTN's plan for sustainability, growth and fiscal oversight?

  • Increase federal funding and engage commercial partnerships to support operations in a sustainable model
  • Fundraise locally to support sites
  • Maintain and grow philanthropy for research and clinical translational projects.
  • Institute performance metrics to monitor site funding levels, budget reports approved by leadership and foundations for approval

What is the fiscal year?

  • July 1 to June 30
  • Secured funding for the next fiscal year (July 1, 2021+) will occur during current FY

Where do I send funding to and how should I ensure it is directed to CBTN?

  • CBTN is not a 501 3c but as Operations are at CHOP uses CHOP as our legal and financial management system
  • CHOP does not take any overhead on donations
  • Funding raised by CHOP or sent to CHOP is distributed per donor intent

How does site funding work?
Does CBTN subcontract to the primary sites?

  • Yes, subcontracts with the sites are legal agreements for the work they will perform for CBTN
  • Funding for the sites and operations needs to be secured before June 30th of the fiscal year. 

Current CBTN Grant Submissions and Awards:
NIH grant submissions

  • NCI Pediatric Brain Tumor SPORE submitted notification late 2021
  • NCI CCDI
  • DOD “Rare Cancers Research Program Resource and Community Development Award” submission Nov 2020
CBTN RESEARCH
 


KEY HIGHLIGHTS: CBTN has collaborated on 175 research projects with over 100 investigators across 9 countries. 50 are CBTN investigators and over 70 are non-CBTN investigators. This includes three collaborations with the PNOC disease working groups for the pre-clinical work required for the development of a new clinical trial.




BIOSPECIMEN REQUESTS:
Our FY21 goal is to have 30 new approved biospecimen requests. As of October 30, we have had 5 new projects approved. In an attempt to increase the utilization of biospecimens, CBTN has recruited additional scientific experts to review proposals and formed two committees. You can find information on these projects here https://cbtn.org/projects


All-time total number of requests: 79

  • 65 total requests approved
    • 48 sample requests approved
    • 17 cell line requests approved
  • 4 requests changed to data access requests (data was already generated)
  • 4 requests were withdrawn from consideration by the investigator
  • 5 requests are being reviewed by the operations center for sample availability
  • 1 request is with the investigator for revisions or under further review


REQUESTS FOR RAW GENOMIC DATA:
Our goal is to increase the number of requests and utilization of data. In addition, we aim to have 60 new data projects, and as of October 1, we have had 10 new projects approved. Additionally, “processed data” is available anytime without request has been utilized thousands of times. You can find more information on the data projects here https://cbtn.org/projects

  • 113 total requests approved


MAP OF CURRENT CBTN USERS:


OPEN PBTA landscape analysis phase one is complete and the goal is to finalize a paper in 2020. All data are available and a request was sent out for anyone to contribute to the manuscript and analysis.



RESEARCH OPPORTUNITIES:

We are looking for opportunities to empower and accelerate brain tumor research. Please let us know if there any other researchers you’ve connected with that you would like us to reach out to?




RESEARCH PUBLICATIONS:

CBTN has several key publications occurring now, with new submission to 13 different scientific journals.
Total Accepted: 18


Most Recent:
See more CBTN publications
here

  1. Schieffer, K.M., Agarwal, V., LaHaye, S., Miller, K.E., Koboldt, D.C., Lichtenberg, T., Leraas, K., Brennan, P., Kelly, B.J., Crist, E., Rusin, J., Finlay, J.L., Osorio, D.S., Sribnick, E.A., Leonard, J.R., Feldman, A., Orr, B.A., Serrano, J., Vasudevaraja, V., Snuderl, M., White, P., Magrini, V., Wilson, R.K., Mardis, E.R., Boué, D.R., Cottrell, C.E. YAP1-FAM118B Fusion Defines a Rare Subset of Childhood and Young Adulthood Meningiomas. The American Journal of Surgical Pathology. 2020 Oct 16.
Total Currently Submitted: 4
  1. Submitted an abstract entitled “Discovering genetic interactions in the CBTTC dataset” for BioSB2020, a Dutch conference with focus on bioinformatics and systems biology. Abstract selected for a poster presentation. Conference originally scheduled for 21-22 April 2020, but now postponed to 27-28 October 2020. More information: https://www.aanmelder.nl/biosb2020"
     
  2. Submitted an abstract titled “Reconstructing the Gene Regulatory Landscape of Pediatric BrainTumors” to the 2020 ISMB meeting (Regulatory and Systems Genomics track)
     
  3. Payal Jain, Lea F. Surrey, Joshua Straka, Pierre Russo, Richard Womer, Marilyn M. Li, Phillip B. Storm, Angela Waanders, Michael D. Hogarty, Adam Resnick, Jennifer Picarsic. ‘Novel BRAF fusions in pediatric histiocytic neoplasms define distinct therapeutic responsiveness to RAF paradox breakers’. (Submitted to Cancer Research, May 2020)
     
  4. The Immunogenomic Landscape of Primary Pediatric Solid Tumours- (Submitted to Cancer Cell)
Pending Submission: 5
  1. High-grade glioma cell line models for pediatric cancer. Mateusz Koptyra, Komal S. Rathi, Valerie Baubet, Jo Lynne Rokita
     
  2. OPEN PBTA Manuscript is on track, goal pre-print Sept 2020
     
  3. CBTTC Resource Paper being reviewed submission to J Neuro-Oncology and Neurosurgery goal Sept 2020
     
  4. A Transcriptome-based Classifier to Determine Molecular Subtypes in Medulloblastoma.
     
  5. Ammar S. Naqvi, Brian Ennis, Krutika S. Gaonkar, Michael Koldobskiy, Yuankun Zhu, Miguel A. Brown, Bo Zhang, Phillip B. Storm, Adam C. Resnick, Jo Lynne Rokita (2020). “Molecular mechanisms and functional impact of aberrant splicing in diffuse intrinsic pontine gliomas”.

RESEARCH PRESENTATIONS AT CONFERENCES:
5 Abstracts accepted
  1. Ammar S. Naqvi, Brian Ennis, Krutika S. Gaonkar, Michael Koldobskiy, Yuankun Zhu, Miguel A. Brown, Bo Zhang, Phillip B. Storm, Adam C. Resnick, Jo Lynne Rokita (2020). “Molecular mechanisms and functional impact of aberrant splicing in diffuse intrinsic pontine gliomas”. ABSTRACT #446. RNA 2020 on-line meeting.
     
  2. Payal Jain presented to the AACR virtual meeting (June 22-24). Her abstract was #6746: Novel BRAF gene fusions in pediatric histiocytic neoplasms respond differently to RAF targeted therapies based on dimerization profiles.
     
  3. Lauren M. Sanders, A. Geoffrey Lyle, Holly C. Beale, Ellen Towle Kephart, Katrina Learned, Jacob Pfeil, Jennifer Peralez, Norman Lacayo, Arun Rangaswami, Sheri L. Spunt, Isabel Bjork, David Haussler, Sofie R. Salama, Olena M. Vaske, "Comparative gene expression analysis for identification and prioritization of therapeutic targets in a cohort of childhood cancers." Poster, AACR Advances in Pediatric Cancer Research Conference, Montreal, September 2019.
     
  4. Olena M. Vaske. Data Federation Approaches in Treehouse Childhood Cancer Initiative. Invited Talk. Childhood Cancer Data Initiative Symposium, Washington, DC, July 2019.
     
  5. Submitting an abstract to the AACR conference "Tumor heterogeneity: from single cells to clinical impact" to be held in Philadelphia on September 10-13. Preparing a manuscript entitled "Cell Ecosystem and Signaling Pathways of Posterior Fossa Childhood Ependymoma Revealed by Single-Cell Transcriptomic Profiling", - plan to submit for publication this fall.
     
CELL LINE DATA GENERATION EFFORTS:
Currently the CBTN has 70+ cell lines that are available for pre-clinical testing. To enhance these pre-clinical models researchers perform genomic testing WGS and RNA Seq on the cell lines in addition to the tumor samples. Currently, this genomic characterization has begun for specific brain tumor types but is funding-dependent to continue. Please reach out to Jena Lilly (lillyj@gmail.com) if you would like to sponsor.

 

*Undergoing confirmation. Numbers may change.


CBTN/PNOC WORKING GROUPS:
There are seven CBTN/PNOC working groups - Medulloblastoma, DMG, ATRT, LGG, Ependymoma, Craniopharyngioma and Imaging. Each working group has their own goals and they convene once every month and collaborate on preclinical and clinical research. The groups are facilitated with CBTTC by allowing for sharing of resources, clinical data, biospecimens, preclinical models and genomic and proteomic data that can be used to develop new data-driven clinical trials. If you would like to participate or learn more please contact Ryan Velasco (velascor@email.chop.edu

Medulloblastoma Leads: 

  • Robert Wechsler-Reya, PhD; Sanford Burnham Prebys
  • Tabitha Cooney, MD; UCSF Benioff Children’s Hospital

Craniopharyngioma  Leads: 

  • Cassie Kline, MD; Children's Hospital of Philadelphia
  • Fatema Malbari, MD; Texas Children’s Hospital

LGG leads: 

  • Angela Waanders, MD, MPH; Ann & Robert H. Lurie Children’s Hospital of Chicago
  • Daphne Adele Haas-Kogan, MD; Dana-Farber Cancer Institute
  • Pratiti Bandopadhayay, MBBS, PhD; Dana-Farber Cancer Institute
  • Joanna Phillips, MD, PhD; UCSF Helen Diller Family Comprehensive Cancer Center

ATRT leads: 

  • Ashley Margol, MD, MS; Children’s Hospital Los Angeles
  • Annie Huang, MD, PhD, FRCP(C); The Hospital for Sick Kids
  • Eric Raabe, MD, PhD; Johns Hopkins School of Medicine.

Ependymoma leads: 

  • Eugene Hwang, MD; Children’s National Health System
  • Mariella Filbin, MD, PhD; Dana-Farber Cancer Institute
  • Steven Mack, PhD; Texas Children's Hospital
  • Derek Hanson, MD; Hackensack Meridian Health

DMG leads:

  • Sabine Mueller, MD, PhD; UCSF Benioff Children’s Hospital
  • Javad Nazarian, PhD; University Children’s Hospital of Zurich
Imaging Working Group leads:
  • Josh Rubin, MD, PhD; Washington University School of Medicine, St. Louis
  • Javier Villaneuva-Meyer, MD; University of California, San Francisco
  • S. Ali Nabavizadeh, MD; Hospital of the University of Pennsylvania 
CBTN COMMUNICATIONS



Events/Communications:
Do you need any resources, collateral materials, or participation from the CBTN for any scheduled event or any other activity.

Reach out to our
Communications Team at communications@cbtn.org. We're happy to support your work!

CBTN Website Launch
This month, we were proud to officially launch the new Children’s Brain Tumor Network Website (cbtn.org) to the public! The CBTN communications team is so grateful to all of you who reviewed the site ahead of our launch, provided valuable feedback, and supplied additional content for our Foundation Partners pages. The new CBTN.org is meant to be a powerful resource to the scientific community and we’ll continue to hone and develop features over the next few months. 

We hope you’ll check back often and continue to provide feedback on the website. To do so, select the blue “Feedback” tab on the right-hand side for each page within your browser window




You’ll be able to select the area of the page and enter your feedback, along with an opportunity to provide your email address. This will allow us to follow up with you individually if we have questions regarding the feedback you provided. Once you have completed your comments, select “Submit” and a ticket will be created for our development team to review. 

We’re working to improve many of the site’s features, including adding additional images and graphics, but we’d love to know what could make the website a useful resource for your organization. We’re tentatively planning to launch the website in mid October (10/19) for the initial release. Additional features are also being identified for Version 2 development by the end of December 2020. Please stay tuned for updates and additional features!  


Brand Development Updates:
Please click the link below to view the CBTN brand style guide. This style guide defines the CBTN’s brand standards and will be used as a reference in creating all CBTN branded handouts, infographics, videos and other collateral materials. This is intended for CBTN internal use as well as working to create materials with external vendors, agencies and member institutions. 

View the style guide

We’ve also begun creating a library of CBTN print and digital resources - more of these assets including one-pagers and infographics will be shared with you over the coming weeks and months and will form a toolkit for foundations and other groups to use to share about the CBTN’s research. 

If you have suggestions or feedback for website features to include, perhaps from other websites you’ve especially liked, please contact us at
communications@cbtn.org

Milestones:



Social Media Metrics - October 2020:

Facebook
  • Audience Reach: 3,603 users (4,067 impressions)
  • Users Directly Engaged: 185
  • Engagement Rate: 5.13% (1-3%: industry avg.)
  • Followers Gained: 15
  • Current Followers: 606
     

Twitter

  • Audience Reach: 17,062 users
  • Users Directly Engaged: 709
  • Engagement Rate: 4.15% (0.33% industry avg.)
  • Followers Gained: 12
  • Current Followers: 630
     

Instagram
We've just launched the CBTN's new Instagram account! You can now follow us at www.instagram.com/childrensbraintumornetwork/


CBTN Website Traffic - October 2020:

  • 461 Unique Users, visiting from 21 countries around the globe
    (86.1% New Users)
  • 727 Sessions
  • 1,028 Pageviews
Q&A SPOTLIGHT

Question: How do we know if there are genetic links found? Can you let us know if there are?

Answer: Families can learn about genetic links from the published findings of CBTN research projects. Patient families can consult with their doctor about participating in a clinical trial. Unfortunately, we cannot contact patients and families to provide results due to confidentiality restrictions.

 
PAST REPORTS
 
Did you miss one of our last CBTN Foundation Partners Reports? You can access them here!
Follow us on Twitter
Follow us on Facebook
Visit our Website
Email
Instagram
Copyright © 2020 Children's Hospital of Philadelphia/Center for Data-Driven Discovery in Biomedicine, All rights reserved.


Want to change how you receive these emails?
You can update your preferences or unsubscribe from this list.

Email Marketing Powered by Mailchimp