Rare-X was created to accelerate rare disease research, treatments, and cures by removing barriers for data collection and sharing.
This component of the My Hero Initiative involves medical surveys that ask questions about all systems of the body. The detailed “Head to Toe” surveys provide valuable information.
Caregivers, if you wish to participate in biospecimen collection through Rare-X, you must sign up as a Caregiver & Patient. We ask that you enroll and complete the consent form on your behalf first. Once in the registry, you will add your hero.
Additionally, for Project 8p Foundation to receive your data, you must answer “Yes” to the following consent question:
“Do you want to share your contact information with patient advocacy groups that support your diagnosis?”
Rare-X is a valuable partner to Project 8p. Their platform works collaboratively, with the Chromosome 8p Registry to ensure we are capturing Chromosome 8p symptomatology. Additionally, their collaborative network expands our reach to other researchers studying common 8p features.
Rare-X offers many standardized surveys that increase our understanding of Chromosome 8p Rearrangements. Data collected from Rare-X will be aggregated and analyzed in our ongoing natural history study. Additionally, Rare-X is helping facilitate mobile phlebotomists to ease the burden of blood collections for the 8p Biorepository.
The Neurogenetics Clinic’s goal is to provide world-class expertise and multi-disciplinary care to patients, through personalized care plans and access to cutting edge research to advance the care of these rare conditions.
This component of the My Hero Initiative is focused on medical care, however, participants can opt to have their clinical data added to the My Hero Initiative contributing to our understanding of Chromosome 8p.