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CBTN FOUNDATION PARTNERS REPORT-OUT
December 2020

To our CBTN partners,

It has been a gratifying few weeks for our team. As you may have seen,
Cell Press published a new CBTN manuscript on November 25th, and the response from the scientific community has been wonderful! CBTN partnered with the NIH’s Clinical Proteomic Tumor Analysis Consortium (CPTAC) to perform the first large-scale proteomic landscape analysis on pediatric brain tumors. This research provides potential new therapeutic pathways and is being used to develop two new clinical trials. CBTN is so very grateful to our supporters and patients and their families that participated to make this work possible. 

On Thursday, December 17 at 2pm/EST, we’ll be hosting the CBTN/ CPTAC research team from this study for a
panel discussion streamed LIVE on our Facebook page. You can learn more in the Communications section, below. We hope you can share this event with your colleagues and friends, and look forward to an enlightening discussion!

Also this month, CBTN submitted a grant to the U.S. Dept of Defense. This would provide CBTN funding for the collection and distribution of brain tumor resources including specimens, preclinical models, and data. 

Looking ahead, We’re eager to participate in this year’s meeting of the
International Society of Pediatric Neuro-Oncology (ISPNO) from December 13 to 16. CBTN’s Executive Co-Chairs, Angela Waanders and Brian Rood, along with a host of CBTN investigators, will be giving presentations and presenting abstracts at this prestigious gathering of leading experts in pediatric brain tumor research. We’ll share the complete list of CBTN participants next week, and hope you’ll follow along on social media throughout the conference for updates on our research presentations.

Finally, we hope you’ll help to spread the word about next week’s
CBTN Community Information Session, where we’ll take a closer look at the vast amounts of resources available through CBTN to power global research, and explain how patient families are critical partners in bringing about breakthroughs in scientific discovery. 

Please find the report for November 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! Seven of those 25 sites are all in varying stages of on-boarding. On-boarding 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 On-boarding: 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 and 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 sites fully on-boarded
  • Overall Total Enrolled
    • All-Time: 4,811
    • FY21: 182
  • Total Children Enrolled
    • All-Time: 3,693
    • FY21: 148
  • Total Mothers Enrolled
    • All-Time: 628
    • FY21: 21
  • Total Fathers Enrolled
    • All-Time: 490
    • FY21: 13
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 - 467
  • Low Grade Glioma - 1,105
  • High Grade Glioma - 408
  • Ependymoma - 408
  • Craniopharyngioma - 161
  • Dysembryoplastic Neuroeithelial Tumor (DNET) - 83
  • Ganglioglioma - 213

FINANCIAL UPDATES:
The CBTN FY20 Budget report and FY21 budget plan has been circulated. Please let us know if you have any questions. Currently for FY22 we have raised a projected $100,000 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. Donations can now be made to CBTN via the new website. 

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 awarded new fundings opportunities coming
  • DOD “Rare Cancers Research Program Resource and Community Development Award” submitted Nov 30, 2020
  • NICHD X01 grant submission Jan 2021
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 November 30, we have had 9 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: 82

  • 69 total requests approved
    • 50 sample requests approved
    • 19 cell line requests approved
  • 4 requests changed to data access requests (data was already generated)
  • 4 requests were withdrawn from consideration by the investigator
  • 4 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 November 30, we have had 17 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

  • 119 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: 19


Most Recent:
See more CBTN publications
here

  1. Petralia F, Tignor N, Reva B, Koptyra M, Chowdhury S, Rykunov D, Krek A, Ma W, Zhu Y, Ji J, Calinawan A, Whiteaker JR, Colaprico A, Stathias V, Omelchenko T, Song X, Raman P, Guo Y, Brown MA, Ivey RG, Szpyt J, Guha Thakurta S, Gritsenko MA, Weitz KK, Lopez G, Kalayci S, Gümüş ZH, Yoo S, da Veiga Leprevost F, Chang H-Y, Krug K, Katsnelson L, Wang Y, Kennedy JJ, Voytovich UJ, Zhao L, Gaonkar KS, Ennis BM, Zhang B, Baubet V, Tauhid L, Lilly JV, Mason JL, Farrow B, Young N, Leary S, Moon J, Petyuk VA, Nazarian J, Adappa ND, Palmer JN, Lober RM, Rivero-Hinojosa S, Wang L-B, Wang JM, Broberg M, Chu RK, Moore RJ, Monroe ME, Zhao R, Smith RD, Zhu J, Robles AI, Mesri M, Boja E, Hiltke T, Rodriguez H, Zhang B, Schadt EE, Mani DR, Ding L, Iavarone A, Wiznerowicz M, Schürer S, Chen XS, Heath AP, Rokita JL, Nesvizhskii AI, Fenyö D, Rodland KD, Liu T, Gygi SP, Paulovich AG, Resnick AC, Storm PB, Rood BR, Wang P, Children’s Brain Tumor Network, Clinical Proteomic Tumor Analysis Consortium. Integrated Proteogenomic Characterization across Major Histological Types of Pediatric Brain Cancer. Cell. 2020 Nov 20; Available from: http://dx.doi.org/10.1016/j.cell.2020.10.044 PMID: 33242424

RESEARCH PRESENTATIONS AT CONFERENCES:
Total Abstracts accepted: 7
Most Recent:
  1. Nabbi A, Sun P, Sumedha S, Zhu K, Cindy Yang SY, Paulson JN, Kool M, Rathi K, Kalletla K, Raman P, Zhu Y, Resnick AC, Jones DTW, Jäger N, Pfister SM, Pugh TJ. Abstract PR06: The immunogenomic landscape of pediatric primary solid tumors. Cancer Res [Internet]. American Association for Cancer Research; 2020 Jul 15 [cited 2020 Dec 1];80(14 Supplement):PR06–PR06. Available from: https://cancerres.aacrjournals.org/content/80/14_Supplement/PR06
  2. Petralia, Francesca, Nicole Tignor, Boris Reva, Pichai Raman, Shrabanti Chowdhury, Dmitry Rykunov, Azra Krek, et al. 2020. “Abstract 445: Integrated Proteogenomic Characterization across Seven Histological Types of Pediatric Brain Tumors.” Cancer Research 80 (16 Supplement): 445–445.
Abstracts Submitted: 2
  1. Submitted an abstract entitled “Discovering genetic interactions in the CBTN 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)
Abstract Submissions Pending: 6
  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. CBTN 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 midline gliomas”.
  6. 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’. (Submitting to Blood and Cancer, Dec 2020)
CELL LINE DATA GENERATION EFFORTS:
Currently the CBTN has 80+ 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 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 Community Information Session

 

Since launching in 2011, the Children's Brain Tumor Network has worked with lab scientists, doctors, data experts, and patient families to pull together the world's largest repository of childhood brain tumor specimens.

Our partners have shared over 400TB of longitudinal clinical and genomic data, now searchable using custom-built cloud-based analysis platforms. These resources have enabled the launch of over 150 scientific projects at institutions all over the world!

But how exactly are these resources accessed and utilized? Why are they so important? What's the cost? 

Sign up to join us for this discussion, and get ready to pose your questions and learn more from our panel of experts! You can sign up via Zoom at:

https://zoom.us/meeting/register/tJwodO6rrzkpH9DycpuExiMCtdifTXwAssEB

We hope you’ll help us by sharing the link with your personal and professional contacts!


CBTN & CPTAC Panel Discussion


Visit facebook.com/CBTNework on December 17 at 2pm/EST to Watch LIVE!

A recent study published in Cell, exploring the "proteogenomics" -- the proteins, genes, and RNA transcription -- involved in pediatric brain tumors, has generated a more complete understanding of these tumors and could help physicians more accurately identify different types of tumors and better methods for treating them in children and young adults.

Join us live on Facebook for an hour-long panel discussion with the investigators from CBTN and NCI's Clinical Proteomic Tumor Analysis Consortium (CPTAC) to explore their landmark study, and hear how these insights could change the treatment landscape for countless children around the world.

While watching, you can submit Facebook comments and questions for our moderator to share with our panel of guests! If you have advance questions or comments, send them in to us at
communications@cbtn.org!


Social Media Metrics - October 2020:

Facebook
  • Audience Reach: 4,674 users (5,282 impressions)
  • Users Directly Engaged: 237
  • Engagement Rate: 5.07% (1-3%: industry avg.)
  • Followers Gained: 8
  • Current Followers: 614
     

Twitter

  • Audience Reach: 24,094 users
  • Users Directly Engaged: 346
  • Engagement Rate: 1.43% (0.33% industry avg.)
  • Followers Gained: 41
  • Current Followers: 671
     

Instagram

  • Audience Reach: 473 users (495 impressions)
  • Users Directly Engaged: 50
  • Engagement Rate: 10.5% (2.4% industry avg. for non-profits)
  • Current Followers: 97



CBTN Website Traffic - November 2020:

  • 1,103 Unique Users, visiting from 38 countries around the globe
    (90.6% New Users)
  • 1,294 Sessions
  • 1,549 Pageviews
Q&A SPOTLIGHT

Question: Does this research find out if there is cancer?

Answer: The pathology department is responsible for determining the condition of the disease (if tumor is benign or malignant). Once a diagnosis is confirmed, that information is relayed to your doctor who will review the results. The CBTN research is not part of your child’s diagnosis process.


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


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