TumorGlowTM Pediatric Clinical Trial��-Donor Review-
A Phase II life-saving charitable pursuit in collaboration with Children’s Hospital of Philadelphia (CHOP) & The Spence Family Sarcoma Fund
Phase 1: Inspiration
Children’s Hospital of Philadelphia is a charitable 501(c)(3) nonprofit organization
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In January of 2022, the Spence’s 16-year-old son, Callan, received a devastating diagnosis of Cancer, specifically Synovial Sarcoma. Synovial Sarcoma (SS) is a rare tumor afflicting less than 1 in 3-million cancer patients, many of whom are kids and adolescents. Due to the rarity, location, and size of Callan’s tumor, many medical institutions gave Callan very little chance for survival.
The Spence family interviewed over 6 cancer hospitals before landing on Children’s Hospital of Philadelphia (CHOP). CHOP provided the most comprehensive and promising treatment, including Chemotherapy, Radiation and Surgery. In June 2022, Callan underwent a 10-hour surgery to remove the tumor and required 6 surgeons to implant a 6-inch subclavian artery graft, the removal of his right upper lung lobe, as well as his right vagus and phrenic nerves and right jugular vein.
As of June 2024-2-years later-Callan is considered NED (No Evidence of Disease). A miracle. While there is no assurance that Callan or anyone diagnosed with SS will remain NED, the extension of life through with CHOP was a Godsend
Post Op
Chemo
Radiation
Pathology
Recovery
Phase 1: Clinical Registry & National Tumor Board
Children’s Hospital of Philadelphia is a charitable 501(c)(3) nonprofit organization
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On December 2022, the Spence Family Synovial Sarcoma Fund was established at CHOP. Chas & Laura Spence committed $500,000 of the $1,000,000 need to the fund critical lifesavings initiatives for Callan’s disease. Through the generosity of friends and family the fund was fully funded less than 4-months
1.Development of Synovial Sarcoma Clinical Registry & Biorepository
The formalized registry includes longitudinal clinical and outcome data, treatment, imaging, genomics, and biospecimens from consenting patients. This registry provides a one-stop data source for clinicians and researchers who seek more information about providing care for and advancing research around synovial sarcoma.
2. National Synovial Sarcoma Tumor Board
CHOP sought to develop a one-of-a-kind, collaborative, external-facing national synovial sarcoma tumor board. The board meets once a month – virtually - to bring together a multi-disciplinary team of national experts to discuss synovial sarcoma cases occurring in children, adolescents, and young adults. The purpose of the board is to advance the level of care provided, share expertise within the medical community provide patients and families access and options for the complex care that synovial sarcoma patients often require.
Phase 1: Success
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With Phase 1 funding goal of $1M met, the Clinical Registry & National Tumor Board was quickly operationalized & began executing life-saving deliverables
Synovial Sarcoma Registry & Biospecimen Repository
- Dedicated project managers 🡪 Protocol created
🡪IRB approval 🡪 Initial recruitment
🡪Biorepository approval
June 2024
Update
National Tumor
Board
-Hosted by the Very Rare Malignant Tumors Program at the Children’s Hospital of Philadelphia (CHOP) & Dr. Ted Laetsch.
-Takes place virtually on the 4th Monday of every month
June 2024
Update
Phase 2: TumorGlow Clinical Trial
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The most common location sarcomas relapse/reoccur is to the lungs (~70%) Even after years of “No Evidence of Disease’ (NED), molecular level sarcoma cells may have survived the initial treatments.
The surgical removal of these metastases presents another complicated procedure. While surgeons universally strive to achieve negative margins (RO) and diligently identify all metastases, they are constrained by the limitations of the tools currently available - their eyes and hands – Until Now
TumorGlow is a new technology developed by Dr. Sunil Singal at Hospital of the University of Pennsylvania (HUP) and uses injectable dyes to ‘light up’ tumors under near-infrared light, allowing surgeons better visibility to tumors to help ensure negative surgical margins
Without TumorGlow
With TumorGlow
Phase 2: TumorGlow Clinical Trial (cont.)
Children’s Hospital of Philadelphia is a charitable 501(c)(3) nonprofit organization
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TumorGlow is currently FDA approved drug and is being studied with a 5-year, phase 3 randomized trial for adult Sarcomas at HUP.
In June 2024, Chas & Laura Spence committed $200,000 (over 5-years) of the $1,000,000 needed to launch a TumorGlow study at CHOP for patients <18 years old and will enroll patients with a primary sarcoma in the chest or lung metastases. The trail will run concurrently with the adult trial at HUP to generate critical data on survival, as well as data urgently needed on the efficacy of Tumor Glow in children with Sarcomas.
This trial represents a unique opportunity to forever change the standard of surgical care options for sarcoma patients by enabling surgeons to consider taking on more complex cases that they may have previously denied without TumorGlow technology. Ultimately, there is potential to change the management strategy for these tumors and for the reach and success to extend far beyond the walls of CHOP and HUP.
Phase 2: TumorGlow Clinical Trial Funding
Children’s Hospital of Philadelphia is a charitable 501(c)(3) nonprofit organization
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5-Year Proposed Budget = $1,000,000
CHOP needs to raise an additional $800,000 to fulfill budgetary requirement to launch the pediatric TumorGlow clinical trail (Laura and Chas committed the 1st $200,000). All donations can be made as a 1-time lumpsum donation OR allocated over a 5-year period.
---For example, if you commit $100,000, it could be paid all-at-once or $20,000 over 5-years---
1. Lumpsum Donations can be made directly to the TumorGlow donation website here:
https://chop.donordrive.com/index.cfm?fuseaction=donorDrive.personalCampaign&participantID=148398
2. 5-Year Donations can be made by contacting:
Liz Barone, Director of Development
Cancer Center and Neuroscience Center