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.

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* 1. Describe your relationship to high ROH

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* 2. How did you find out about the high ROH and how long ago was it?

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* 3. How did you react to this news? You can describe this any way you want. This can be your emotional reaction, what you did next, people you reached out to, steps you took to get support, find out more information, confirm the finding, what you searched for on the Internet, etc.

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* 4. How distressing did this feel to you at first?

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* 5. How distressing is this to you now?

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* 6. If your answer changed between these two prior questions, please describe what you think made the difference. Examples could be: the passage of time, learning more about high ROH, finding a support group/secret Facebook group for support, reading stories similar to yours written by other people, talking with a professional, seeing a repeat test that confirmed the finding, etc. Your experience will be unique, so these are only suggestions.

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* 7. Some people feel their "identity" changes when they learn new information about themselves or someone they know. Do you feel this happened to you?

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* 8. Are there support resources you wish you had access to? If yes, what would they be? Examples are: an in-person support group, an online support group, a book to read with information about High ROH, a book to read with stories about others with High ROH, research studies to join, YouTube videos to watch, a conference to attend, etc. This is only a suggested started list; additional ideas are welcome.

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* 9. If there is something about your experience you would like to share that you wish others knew, what would it be?

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* 10. Would you be interested in further contact from Brianne?

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