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No one understands 8p heroes better than themselves and the ones who love them most. The My Hero Initiative gives families the opportunity to tell their 8p hero’s story and add their piece to the Chromosome 8p Puzzle.
What is the My Hero Initiative?
The My Hero Initiative was created by Project 8p to support our patient driven goals.
The My Hero Initiative includes existing and future programs and partnerships that involve data and biospecimen collection, aggregation and analysis.
Why the My Hero Initiative?
The My Hero Initiative was created by Project 8p Foundation in response to the 8p community’s need for an ongoing natural history study. In rare diseases there are many unknowns, only through data collection can those questions be answered. The My Hero Initiative was created to better understand chromosome 8p rearrangements and improve the lives of 8p heroes.
What are studies such as a Natural History Study?
In order to improve medical care, discover disease trends and develop treatments for those affected by chromosome 8p rearrangements we must better understand this disorder. One method is data collection in the form of a natural history study. This type of study examines how a disease progresses over time. “Did the patient’s symptoms change? Was a new diagnosis made? Are symptoms improving?” Data collection methods include (but not limited to) ongoing surveys, reviewing medical records for disease trends and clinical evaluations.
How Can I Participate?
There are 3 components to My Hero Initiative that 8p Heroes (and their immediate family members) can participate in. Enrollment into all three components is not required.
Step 1 Chromosome 8p Registry & Biorepository
Step 2 Rare-X Data Collection Platform
Step 3 Neurogenetics Clinic Visit
Chromosome 8p Registry & Biorepository
The Chromosome 8p registry is a secure data collection platform for individuals (and immediate family members) with chromosome 8p rearrangements. Participants are asked to complete a series of 8p specific online surveys that can provide valuable information to guide new research, improve quality of life, better understand the 8p journey, and discover unmet medical needs.
The Chromosome 8p biorepository is optional and stores biospecimens such as tissue and blood samples. The samples may be used in 8p research to better understand the disease or to confirm genetic diagnosis and can also be used to conduct whole genome sequencing or RNA sequencing. If any sequencing is done on you or your family member, you may provide consent for a healthcare provider to interpret these results for you. A participant can partake in the Chromosome 8p Registry without providing biological samples.
Rare-X Data Collection Platform
Rare-X is a platform to collect, connect and share data. 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 standardized surveys that ask questions on all systems of the body. The detailed “Head to Toe” surveys provide valuable information.
Multidisciplinary Neurogenetics Clinic
The Neurogenetics Clinic’s vision 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.