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Public Profile -- hu26E291

Public profile url: https://my.pgp-hms.org/profile/hu26E291

Personal Health Records

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Samples

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Uploaded data

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Geographic Information

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Family Members Enrolled

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Surveys

PGP Participant Survey Responses submitted 5/12/2012 6:08:02. Show responses
Timestamp 5/12/2012 6:08:02
Year of birth 50-59 years
Which statement best describes you? I am NOT comfortable making my genome sequence data publicly available without prior review.
Severe disease or rare genetic trait Yes
Do you have a severe genetic disease or rare genetic trait? If so, you can add a description for your public profile. Tarlov's cysts at S1S2 causing pain, neuropathy, bowel and bladder dysfunction. Treated at John's Hopkins. Multiple left sided spinal cysts. Micrognathia needing sagittal spit osteotomy
Disease/trait: Onset Congenital / present at birth
Disease/trait: Rarity Very rare/uncommon
Disease/trait: Severity Moderate severity disease
Disease/trait: Relative enrollment Maybe
Disease/trait: Diagnosis Yes
Disease/trait: Genetic confirmation No
Disease/trait: Documentation Yes
Disease/trait: Documentation description CT scans/MRI Documentation from Dr. Donlin Long neurosurgeon
Sex/Gender Female
Race/ethnicity White
Maternal grandmother: Country of origin Germany
Paternal grandmother: Country of origin Poland
Paternal grandfather: Country of origin Germany
Maternal grandfather: Country of origin Czech Republic
Enrollment of relatives No
Enrollment of older individuals Yes
Enrollment of parents Maybe
Have you uploaded genetic data to your PGP participant profile? No, I have no genetic data.
Have you used the PGP web interface to record a designated proxy? Yes
Have you uploaded health record data using our Google Health or Microsoft Healthvault interfaces? No, but I plan to
Blood sample Yes
Saliva sample Yes
Microbiome samples Yes
Tissue samples from surgery Yes
Tissue samples from autopsy Yes

Absolute Pitch Survey [see all responses]

Can tell if notes are in tune: Yes
Can sing a melody on key: Yes
Can recognize musical intervals: Yes
Do you have absolute pitch? No

Enrollment History

Participant ID:hu26E291
Account created:2012-05-10 16:22:01 UTC
Eligibility screening:2012-05-10 16:28:52 UTC (passed v2)
Exam:2012-05-10 17:18:52 UTC (passed v20120430)
Consent:2015-08-06 14:32:04 UTC (passed v20150505)
Enrolled:2012-05-12 01:37:25 UTC