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PGP Participant Survey
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Responses submitted 7/16/2011 9:23:56.
Show responses
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| Timestamp |
7/16/2011 9:23:56 |
| Year of birth |
40-49 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. |
I inherited Autosomal Dominant Polycystic Kidney Disease (ADPKD) from my father, as did two of my siblings. I learned recently that I also have a very mild form of Von Willebrand Disease. |
| Disease/trait: Onset |
Congenital / present at birth |
| Disease/trait: Rarity |
Uncommon |
| Disease/trait: Severity |
Moderate severity disease |
| Disease/trait: Relative enrollment |
Yes, I have one or more affected relatives who have expressed an interest |
| Disease/trait: Diagnosis |
Yes |
| Disease/trait: Genetic confirmation |
Yes |
| Disease/trait: Documentation |
Yes |
| Disease/trait: Documentation description |
I'm part of a study -- taking an experimental drug called Tolvaptan that may prove successful in treating PKD. As part of that study, an MRI of my kidneys is taken once a year. Perhaps that MRI could be uploaded. |
| 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 |
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? |
Yes |
| Uploaded health records: Update status |
Yes |
| Uploaded health records: Extensiveness |
4 |
| Blood sample |
Yes |
| Saliva sample |
Yes |
| Microbiome samples |
Yes |
| Tissue samples from surgery |
Yes |
| Tissue samples from autopsy |
Yes |
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PGP Trait & Disease Survey 2012: Genitourinary Systems
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Responses submitted 2/5/2013 9:51:43.
Show responses
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| Timestamp |
2/5/2013 9:51:43 |
| Other condition not listed here? |
Polycystic kidney disease |
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PGP Trait & Disease Survey 2012: Congenital Traits and Anomalies
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Responses submitted 2/5/2013 9:55:46.
Show responses
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| Timestamp |
2/5/2013 9:55:46 |
| Have you ever been diagnosed with any of the following conditions? |
Polycystic kidney disease |
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PGP Trait & Disease Survey 2012: Circulatory System
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Responses submitted 2/5/2013 9:56:54.
Show responses
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| Timestamp |
2/5/2013 9:56:54 |
| Have you ever been diagnosed with one of the following conditions? |
Mitral valve prolapse |
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PGP Participant Survey
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Responses submitted 2/5/2013 10:01:26.
Show responses
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| Timestamp |
2/5/2013 10:01:26 |
| Year of birth |
40-49 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. |
Polycystic kidney disease |
| Disease/trait: Onset |
Congenital / present at birth |
| Disease/trait: Rarity |
Uncommon |
| Disease/trait: Severity |
Very severe disease |
| Disease/trait: Relative enrollment |
No |
| Disease/trait: Diagnosis |
Yes |
| Disease/trait: Genetic confirmation |
Yes |
| Disease/trait: Documentation |
Yes |
| Disease/trait: Documentation description |
MRI scans, if I got permission to upload them |
| 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 |
No |
| 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? |
Yes |
| Uploaded health records: Update status |
Yes |
| Uploaded health records: Extensiveness |
5 |
| Blood sample |
Yes |
| Saliva sample |
Yes |
| Microbiome samples |
Yes |
| Tissue samples from surgery |
Yes |
| Tissue samples from autopsy |
Yes |
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PGP Trait & Disease Survey 2012: Blood
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Responses submitted 2/5/2013 10:01:58.
Show responses
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| Timestamp |
2/5/2013 10:01:58 |
| Have you ever been diagnosed with any of the following conditions? |
Von Willebrand disease |
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PGP Trait & Disease Survey 2012: Cancers
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Responses submitted 2/5/2013 10:02:54.
Show responses
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| Timestamp |
2/5/2013 10:02:54 |
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PGP Trait & Disease Survey 2012: Endocrine, Metabolic, Nutritional, and Immunity
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Responses submitted 2/5/2013 10:03:28.
Show responses
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| Timestamp |
2/5/2013 10:03:28 |
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PGP Trait & Disease Survey 2012: Respiratory System
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Responses submitted 2/5/2013 10:04:01.
Show responses
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| Timestamp |
2/5/2013 10:04:01 |
| Have you ever been diagnosed with any of the following conditions? |
Asthma |
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PGP Trait & Disease Survey 2012: Musculoskeletal System and Connective Tissue
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Responses submitted 2/5/2013 10:04:33.
Show responses
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| Timestamp |
2/5/2013 10:04:33 |
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PGP Trait & Disease Survey 2012: Nervous System
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Responses submitted 2/5/2013 10:05:05.
Show responses
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| Timestamp |
2/5/2013 10:05:05 |
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PGP Trait & Disease Survey 2012: Skin and Subcutaneous Tissue
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Responses submitted 2/5/2013 10:06:01.
Show responses
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| Timestamp |
2/5/2013 10:06:01 |
| Have you ever been diagnosed with any of the following conditions? |
Hair loss (includes female and male pattern baldness) |
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PGP Trait & Disease Survey 2012: Vision and hearing
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Responses submitted 2/5/2013 10:07:45.
Show responses
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| Timestamp |
2/5/2013 10:07:45 |
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PGP Trait & Disease Survey 2012: Digestive System
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Responses submitted 2/5/2013 10:15:03.
Show responses
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| Timestamp |
2/5/2013 10:15:03 |
| Have you ever been diagnosed with any of the following conditions? |
Dental cavities, Canker sores (oral ulcers) |
| Other condition not listed here? |
A hernia was repaired when I was five. I don't know what kind. Probably hiatal. |