The My Hero Initiative Complementary Studies advance our understanding of Chromosome 8p Disorders. Working with the first three steps of the My Hero Initiative, this component is designed to enhance our primary studies, providing a comprehensive understanding of each subject matter.
If you’re interested in participating, please email kaiti@project8p.org for more information. Thank you for your consideration.
The Chromosome 8p Biorepository is recruiting 8p Hero-derived skin cells (fibroblasts). Fibroblast cells are beneficial for their ability to run screens faster than other disease models, including drug repurposing screens, and their ability to examine the aging process.Â
Learn more about fibroblast studies here.Â
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This study requires a 2mm skin punch. Project 8p is currently collecting 8p Heroes and their same-sex biological parents.
For questions or to participate, please email kaiti@project8p.org
We’re conducting a study in partnership with COMBINEDBrain to better understand the needs of chromosome 8p families. We’re trying to determine the most impactful symptoms of Chromosome 8p disorders to inform meaningful outcome measurements in future clinical trials.
The study will involve a 60–90-minute audio-recorded interview consisting of a conversational questionnaire about your child’s symptoms and treatments to learn how these impact you, your child, and your family. By sharing your story, you’ll help researchers determine what matters most to the chromosome 8p community. Together, with input from caregivers and healthcare providers, we hope to inform future clinical trial outcome measurement and improve healthcare for children and adults with chromosome 8p disorders.
If you’re interested in participating, please email bina@project8p.org for more information. Thank you so much for your consideration.
Please ensure you are enrolled in Step 1 of the My Hero Initiative: The Chromosome 8p Registry.
This study is with Illumina and involves a blood collection for the 8p Hero and direct biological relatives (Parents or Siblings who are interested in participation). We utilize mobile phlebotomy to collect the sample, the sample is then sent to Illumia where they perform whole-genome and whole-transcriptome sequencing and analysis of the variant impact.
If you’re interested in participating, please email bina@project8p.org for more information. Thank you so much for your consideration.
This study does require enrollment in Step 2 of the My Hero Initiative: Rare-X 8p Data Collection Platform.
Dr. Evan Eichler at the Univ. of Washington will be leading this effort. He is a Howard Hughes Medical Institution scientist, one of the world’s leading geneticists. He is interested in looking at the details of the genes involved in the 8p Hero, which are significant ones, and the cause of this change to help contribute towards.
His study is requesting blood samples from the patient and parents and information about the patient’s symptoms. The goal of this study is to help us understand the underlying mechanism that led to this 8p diagnosis for your family and if precise differences from each patient’s genetic breakpoints contribute to the variability in the symptoms.
Please ensure you are enrolled in Step 1 of the My Hero Initiative: The Chromosome 8p Registry.
Project 8p Foundation is a registered 501(c)(3) charitable organization with EIN 83-2545342. All contributions are deemed tax-deductible
