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PGP Participant Survey
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Responses submitted 9/20/2011 19:32:20.
Show responses
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| Timestamp |
9/20/2011 19:32:20 |
| Year of birth |
60-69 years |
| Which statement best describes you? |
I am 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. |
Ability to perceive relationships among events, phenomena, people etc. which others see as disconnected.
Abilty to think objectively & quantitatively about all phenomena, reguardless of emotogenic connotations. |
| Disease/trait: Onset |
Congenital / present at birth |
| Disease/trait: Rarity |
Uncommon |
| Disease/trait: Severity |
Not applicable |
| Disease/trait: Relative enrollment |
Maybe |
| Disease/trait: Diagnosis |
Not applicable |
| Sex/Gender |
Male |
| Race/ethnicity |
White |
| Maternal grandmother: Country of origin |
United States |
| Paternal grandmother: Country of origin |
United States |
| Paternal grandfather: Country of origin |
United States |
| Maternal grandfather: Country of origin |
United States |
| Enrollment of relatives |
No |
| Enrollment of older individuals |
Yes |
| Enrollment of parents |
No |
| 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 |
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PGP Participant Survey
|
Responses submitted 11/28/2011 14:01:16.
Show responses
|
| Timestamp |
11/28/2011 14:01:16 |
| Year of birth |
60-69 years |
| Which statement best describes you? |
I am 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. |
Ability to perceive relationships among, & implications of, data that others rarely seem to perceive.
Cognitive objectivity. |
| Disease/trait: Onset |
Congenital / present at birth |
| Disease/trait: Rarity |
Very rare/uncommon |
| Disease/trait: Severity |
Not applicable |
| Disease/trait: Relative enrollment |
Yes, I have one or more affected relatives who have expressed an interest |
| Disease/trait: Diagnosis |
Not applicable |
| Sex/Gender |
Male |
| Race/ethnicity |
White |
| Maternal grandmother: Country of origin |
Sweden |
| Paternal grandmother: Country of origin |
Germany |
| Paternal grandfather: Country of origin |
United Kingdom |
| Maternal grandfather: Country of origin |
Sweden |
| Enrollment of relatives |
Yes |
| Enrollment of older individuals |
Yes |
| Enrollment of parents |
No |
| Enrolled relatives [Children] |
1 |
| Are all your enrolled relatives linked to your PGP profile? |
Yes |
| 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? |
Yes |
| Uploaded health records: Update status |
Yes |
| Uploaded health records: Extensiveness |
3 |
| Blood sample |
Yes |
| Saliva sample |
Yes |
| Microbiome samples |
Yes |
| Tissue samples from surgery |
Yes |
| Tissue samples from autopsy |
Yes |
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PGP Participant Survey
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Responses submitted 12/24/2011 20:51:51.
Show responses
|
| Timestamp |
12/24/2011 20:51:51 |
| Year of birth |
60-69 years |
| Which statement best describes you? |
I am 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. |
Probable Genetic Vascular Defect: My biological mother died at age 55 from a burst berry aneurysm of the Circle of Willis. As a child she hasuffered so much from what is commonly called "prickly heat" that she had to drop out of hi school for a year. I sometimes had prickly heat on my chest as a child, but never so severely that it changed my life activities. At birth I had 2 strawberry birthmarks - one just below my left clavicle, and a larger one, about 2" x1" in size, located 1" to the left of my lumbar vertebrae. They were burned off with Radium when I was a baby. At age 30 a cavernous hemangioma was found in the upper frontal bone of my skull. It was removed & replaced by a plastic plate. A CAT scan at age 60 reported no signs of brain aneurysms. |
| 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 |
Neuro surgeon's description of my cavernous hemangioma & his surgical removal of it. |
| Sex/Gender |
Male |
| Race/ethnicity |
White |
| Maternal grandmother: Country of origin |
Sweden |
| Paternal grandmother: Country of origin |
Germany |
| Paternal grandfather: Country of origin |
United Kingdom |
| Maternal grandfather: Country of origin |
Sweden |
| Enrollment of relatives |
Yes |
| Enrollment of older individuals |
Yes |
| Enrollment of parents |
No |
| Enrolled relatives [Children] |
1 |
| Are all your enrolled relatives linked to your PGP profile? |
Yes |
| 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? |
Yes |
| Uploaded health records: Update status |
No |
| Uploaded health records: Extensiveness |
2 |
| Blood sample |
Yes |
| Saliva sample |
Yes |
| Microbiome samples |
Yes |
| Tissue samples from surgery |
Yes |
| Tissue samples from autopsy |
No |