The High ROH Story Collection Project |
Introduction to "The High ROH Story Collection Project"
This is a place to share your story about High ROH. Whether you are an individual affected by High ROH, or are a family member, friend, or professional working with these individuals, learning this information can be life-changing. The goal is to make the stories -- shared here anonymously -- available for others to read, for greater understanding and awareness of High ROH and reduced stigma.
This is an informal survey and the questions have not been validation for a formal research study. This project is being run by an independent genetic counselor Brianne Kirkpatrick and is not being conducted through any institution or under an institutional review board (IRB). If you have information on a grant that could be used to help support these efforts to raise awareness and understanding of High ROH, please reach out to brianne@watersheddna.com.
Brianne may one day compile these responses to make available as an e-book, paperback, or or online anthology. It will depend on the response to the survey and resources available to turn the project into a resource. If you would like to be contacted and are willing for Brianne to know your email address, please leave that information in the last question of the survey. Your survey response will not be linked to any information about you unless you provide that information in the survey.
Thank you in advance for the time you spend to share your story.
*High ROH is a short way to refer to high levels of "runs of homozygosity" detected on a genetic test for an individual person. When high ROH is detected on most or all of the chromosomes, this is typically an indication of a "close family" relationship between the mother and father of the person whose DNA was tested.