The My Hero Initiative was created by Project 8p to support our patient driven goals:
This includes all programs, partnerships and activities that involve data and biospecimen collection, aggregation and analysis.
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, aggregation and analysis can those questions be answered. The My Hero Initiative was created to better understand chromosome 8p rearrangements and improve the lives of 8p heroes.
In rare diseases there are many unknowns, one way to improve our understanding of these disorders is to conduct a natural history study. This type of research identifies disease trends over time. Only through data and biospecimen collection, aggregation and analysis can we begin to understand Chromosome 8p and identify potential treatments for our heroes.
In rare diseases there are many unknowns, one way to improve our understanding of these disorders is to conduct a natural history study. This type of research identifies disease trends over time. Only through data and biospecimen collection, aggregation and analysis can we begin to understand Chromosome 8p and identify potential treatments for our heroes.
There are 3 components to the My Hero Initiative that 8p Heroes (and their immediate family members) can participate in. Enrollment into all three components is not required.
The My Hero Initiative includes three components that assist with the collection of patient information and biospecimen samples. The steps work collaboratively to provide valuable insights for our understanding of Chromosome 8p. Participation in all 3 is not necessary, but will further contribute to our goal of accelerating treatments for 8p Heroes.
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 stores biospecimens such as tissue and blood samples. The samples may be used 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 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 medical surveys that ask questions on all systems of the body. The detailed “Head to Toe” surveys provide valuable information.
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 stores biospecimens such as tissue and blood samples. The samples may be used 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
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.
The Chromosome 8p registry is a secure collection of individuals (and immediate family members) with chromosome 8p rearrangements. Participants are asked to complete a series of online surveys that can provide valuable information to guide new research, improve 8p patient quality of life, better understand the patient journey and discover unmet medical and community needs.
The Chromosome 8p biorepository stores biospecimens such as tissue and blood samples. The samples may be used 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.
Accordion Content
Partaking in multiple data collection programs expands our network to rare disease researchers, studies and clinical trials.
Project 8p will continue and expand our natural history study on Chromosome 8p Disorders through the Chromosome 8p Registry & Biorepository.
Following our 5 year strategic plan, Project 8p will continue to focus on:
Caregivers, we ask that you enroll yourself as a caregiver and complete the consent form on your behalf first. The Caregiver Consent includes the option to participate in the Biorepository. Once in the registry, you will add your hero.
Chromosome 8p Enrollment Guide (Needs updated)
A patient registry is a collection, for one or more purposes, of standardized information about a group of patients who share a condition or experience.
Accordion Content
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 8p DCP Enrollment Guide
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.
The Neurogenetics Clinic provides 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 focuses 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.
Project 8p Foundation is a registered 501(c)(3) charitable organization with EIN 83-2545342. All contributions are deemed tax-deductible
