PGP Participant Survey
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Responses submitted 7/17/2011 12:23:12.
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Timestamp |
7/17/2011 12:23:12 |
Year of birth |
30-39 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. |
Diagnosed with a rare CNS tumor: myxopapillary ependymoma of the filum terminale. Incidence one in a million per year, roughly. The tumor was present from the age of 18 or earlier. Successfully removed at age 27. |
Disease/trait: Onset |
10-19 years of age |
Disease/trait: Rarity |
Very rare/uncommon |
Disease/trait: Severity |
Very severe disease |
Disease/trait: Relative enrollment |
No |
Disease/trait: Diagnosis |
Yes |
Disease/trait: Genetic confirmation |
No |
Disease/trait: Documentation |
Yes |
Disease/trait: Documentation description |
Operative report, pathology report, symptom timeline, multiple MRIs |
Sex/Gender |
Male |
Race/ethnicity |
White |
Maternal grandmother: Country of origin |
Latvia |
Paternal grandmother: Country of origin |
Turkey |
Paternal grandfather: Country of origin |
Turkey |
Maternal grandfather: Country of origin |
Latvia |
Enrollment of relatives |
No |
Enrollment of older individuals |
No |
Enrollment of parents |
Yes |
Have you uploaded genetic data to your PGP participant profile? |
No, but I have genetic data and plan to upload it |
Have you used the PGP web interface to record a designated proxy? |
No |
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 |
PGP Trait & Disease Survey 2012: Cancers
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Responses submitted 12/18/2012 16:12:10.
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Timestamp |
12/18/2012 16:12:10 |
Other condition not listed here? |
myopapillary ependymoma of the filum terminale |
PGP Trait & Disease Survey 2012: Nervous System
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Responses submitted 12/18/2012 16:13:06.
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Timestamp |
12/18/2012 16:13:06 |
Have you ever been diagnosed with one of the following conditions? |
Migraine without aura, Carpal tunnel syndrome, Other peripheral neuropathy |
Other condition not listed here? |
myopapillary ependymoma of the filum terminale |
PGP Trait & Disease Survey 2012: Congenital Traits and Anomalies
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Responses submitted 12/18/2012 16:18:59.
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Timestamp |
12/18/2012 16:18:59 |
Have you ever been diagnosed with any of the following conditions? |
Syndactyly (webbing of digits) |
PGP Trait & Disease Survey 2012: Endocrine, Metabolic, Nutritional, and Immunity
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Responses submitted 5/3/2014 9:59:24.
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Timestamp |
5/3/2014 9:59:24 |
Have you ever been diagnosed with any of the following conditions? |
Diabetes mellitus, type 2 |
PGP Trait & Disease Survey 2012: Blood
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Responses submitted 5/3/2014 9:59:45.
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Timestamp |
5/3/2014 9:59:45 |
PGP Trait & Disease Survey 2012: Vision and hearing
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Responses submitted 5/3/2014 10:00:14.
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Timestamp |
5/3/2014 10:00:14 |
Have you ever been diagnosed with one of the following conditions? |
Myopia (Nearsightedness), Astigmatism, Dry eye syndrome, Floaters, Tinnitus |
PGP Trait & Disease Survey 2012: Circulatory System
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Responses submitted 5/3/2014 10:00:35.
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Timestamp |
5/3/2014 10:00:35 |
Have you ever been diagnosed with one of the following conditions? |
Hypertension |
PGP Trait & Disease Survey 2012: Respiratory System
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Responses submitted 5/3/2014 10:00:48.
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Timestamp |
5/3/2014 10:00:48 |
PGP Trait & Disease Survey 2012: Digestive System
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Responses submitted 5/3/2014 10:01:16.
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Timestamp |
5/3/2014 10:01:16 |
Have you ever been diagnosed with any of the following conditions? |
Dental cavities |
PGP Trait & Disease Survey 2012: Genitourinary Systems
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Responses submitted 5/3/2014 10:01:29.
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Timestamp |
5/3/2014 10:01:29 |
PGP Trait & Disease Survey 2012: Skin and Subcutaneous Tissue
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Responses submitted 5/3/2014 10:01:54.
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Timestamp |
5/3/2014 10:01:54 |
Have you ever been diagnosed with any of the following conditions? |
Dandruff, Skin tags, Hair loss (includes female and male pattern baldness), Acne |
PGP Trait & Disease Survey 2012: Musculoskeletal System and Connective Tissue
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Responses submitted 5/3/2014 10:02:13.
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Timestamp |
5/3/2014 10:02:13 |
PGP Basic Phenotypes Survey 2015
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Responses submitted 1/28/2016 12:05:57.
Show responses
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Timestamp |
1/28/2016 12:05:57 |
1.1 — Blood Type |
O - |
1.2 — Height |
6'2" |
1.3 — Weight |
210 |
2.1 — Left Eye (Photograph Number) (full-size image: https://goo.gl/XQ2Voh) |
13 |
2.2 — Right Eye (Photograph Number) (full-size image: https://goo.gl/XQ2Voh) |
13 |
2.3 — Left Eye Color - Text Description |
Hazel |
2.4 — Right Eye Color - Text Description |
Hazel |
3.1 — What is your natural hair color currently, when without artificial color or dye? |
brown |
3.3 — Comments |
Blond hair at birth and through toddler years; slowly turned to dark brown over time. |
1.4 — Handedness |
Right |