Count Me In PE-CGS Center

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Count Me In PE-CGS Center

Introduction

Cancers
- Leiomyosarcoma
- Osteosarcoma

Populations
- Children
- Adults

Broad Institute | Dana-Farber Institute | Boston Children’s Hospital

Grant Number: U2C CA252974

Contact

Social Media
- X: @Count_Me_In
- Instagram: @CountMeIn
- Facebook: @JoinCountMeIn
- LinkedIn: Count Me In - Patient-Partnered Research
- Threads: countmein

Partnering with patients to define the clinical and genomic landscape of rare aggressive sarcomas in children and adults.

Broad Institute | Dana-Farber Cancer Institute | Boston Children's Hospital

Rare cancers make up over 25% of tumors in U.S. adults, but these cancers are hard to study because a relatively small number of people are diagnosed with them each year. The Count Me In PE-CGS U2C Research Center will work directly with patients across the United States and Canada with two rare cancers – osteosarcoma and leiomyosarcoma – to generate a large shared dataset of integrated clinical, genomic, molecular, and patient-reported data. This work aims to provide data that will fuel future discoveries, lead to new treatment strategies, and inform future patient-partnered research efforts in other cancer types.

Osteosarcoma (OS) and leiomyosarcoma (LMS) are very rare cancers that begin in bone (OS) and smooth muscle (LMS), respectively. About 1,000 people in the US are diagnosed with osteosarcoma per year and similarly, around 1,500 people are diagnosed with leiomyosarcoma in the US each year. There have not been any substantial improvements to overall patient outcomes or treatment-related side effects in osteosarcoma and leiomyosarcoma over recent decades because their patient populations are small and geographically spread out, making these cancers difficult to study. As such, researchers do not yet have the data needed to better explore and develop new diagnostic methods, targeted therapies, and strategies to enhance prevention. The Count Me In PE-CGS U2C Research Center will partner directly with patients in the United States and Canada to create a shared dataset of medical record, genomic, and patient-reported data that can be accessed by any researcher interested in studying osteosarcoma or leiomyosarcoma. Making these data widely available helps accelerate discoveries that drive new treatment strategies, clinical trials, and standards of care.

The Count Me In PE-CGS U2C Research Center will:

Create and launch two patient-partnered projects – one with the osteosarcoma community and another with the leiomyosarcoma community.
Engage adult and pediatric participants through these patient-partnered projects to generate a shared database of clinical, genomic, molecular, and patient-reported data.
Study and optimize approaches to patient engagement in cancer research, particularly among rural and minority participants and participants across a range of literacy levels, ages, and stages in development.
Accelerate discoveries that drive novel treatment strategies, new clinical trials, and new standards of care.