Count Me In launches new project for pediatric hepatocellular carcinoma (PediHCC) and HCC-like tumors
Count Me In (CMI), an initiative focused on patient-partnered cancer research, has announced the launch of a new cohort for individuals with hepatocellular carcinoma (HCC) and HCC-like tumors. Due to the rarity of these tumors, only a small number of patients have previously been in a position to provide their samples and clinical data for cancer research, until now.
This cohort specifically encompasses pediatric patients with HCC (defined as diagnosed under the age of 21), as well as those with HCC-like tumors (referred to as mixed hepatoblastoma/HCC), aged 6 and above. Hepatoblastoma tumors diagnosed at or over the age of 6 years are believed to behave more similarly to a “mixed” hepatocellular carcinoma and hepatoblastoma (or HCC-like) tumor with features of both diseases. By enrolling those who have been diagnosed with HCN NOS or hepatoblastoma 6 years of age and above, CMI believes there is opportunity to be able to better understand the spectrum of these diseases and how to treat them. Participants do not need to be actively undergoing treatment to enroll.
By engaging with patients directly, the new cohort will reflect comprehensive data from participants and their guardians such as: medical history, genomic information, and unique experiences with cancer. The data will be freely released to the research community worldwide, following a de-identification process.
"Pediatric HCC is a rare and aggressive cancer that is challenging to treat," said Dr. Alli O’Neill of Dana-Farber Cancer Institute, a pediatric oncologist and lead researcher for the HCC cohort. "Through Count Me In, we will be able to meaningfully collaborate with patients and families affected by these rare, under-studied tumors to gain a better understanding of tumor biology and to identify new treatments that can hopefully improve future outcomes for these children."
Count Me In is a patient-led initiative that empowers cancer patients living in the United States and Canada to share access to their medical records, their personal experiences, and biological samples for research. Count Me In is open to anyone who has been diagnosed with cancer living in the United States and Canada and currently has several other specific patient-partnered projects for various types of cancer (such as metastatic breast cancer, brain tumors, and other rare diseases) and has collected data from over 12,500 patients to date.
"We are honored to launch this new cohort for pediatric HCC and to work with patients and families affected by this disease to accelerate research and improve outcomes," said Diane Diehl, Director of Count Me In. "Our approach to empowering patients to enroll in research across other cancer types has continuously shown impactful results in increasing researchers’ availability to large datasets. We are committed to making this model available for rare disease communities where this valuable information is needed most.”
Patients and/or their guardians interested in participating in the HCC or HCC-like project can visit joincountmein.org/pedihcc to learn more and sign up. The program is open to patients and/or guardians residing in the United States and Canada of all genders, ethnicities, and socioeconomic status, and participation is free of charge.