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PGP Participant Survey
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Responses submitted 7/17/2011 22:07:33.
Show responses
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| Timestamp |
7/17/2011 22:07:33 |
| Year of birth |
40-49 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. |
I've had a craniopharyngioma (2 years ago), Juvenile Rheumatoid Arthritis (until age 8), and dextrocardia (right-sided heart) |
| Disease/trait: Onset |
40-49 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 |
MRI, Xrays, hormone tests |
| Sex/Gender |
Female |
| 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 |
Ireland |
| 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 |
4 |
| Blood sample |
Yes |
| Saliva sample |
Yes |
| Microbiome samples |
Yes |
| Tissue samples from autopsy |
Yes |
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PGP Participant Survey
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Responses submitted 10/21/2011 20:48:00.
Show responses
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| Timestamp |
10/21/2011 20:48:00 |
| Year of birth |
40-49 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. |
Dextrocardia (heart on the right side)
craniopharyngioma |
| Disease/trait: Onset |
Congenital / present at birth |
| Disease/trait: Rarity |
Very rare/uncommon |
| Disease/trait: Severity |
Not applicable |
| Disease/trait: Relative enrollment |
No |
| Disease/trait: Diagnosis |
Yes |
| Disease/trait: Genetic confirmation |
No |
| Disease/trait: Documentation |
Yes |
| Disease/trait: Documentation description |
I have many films for my dextrocardia that I would be happy to send via mail but none that I am able to upload. The films are from many years ago.
My craniopharyngioma was documented via multiple MRIs and frozen section histology studies during the removal surgery. |
| Sex/Gender |
Female |
| Race/ethnicity |
White |
| Maternal grandmother: Country of origin |
United States |
| Paternal grandmother: Country of origin |
Ireland |
| 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 |
4 |
| Blood sample |
Yes |
| Saliva sample |
Yes |
| Microbiome samples |
Yes |
| Tissue samples from autopsy |
Yes |
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PGP Fall/Winter 2011 Saliva Kit: Large Tube Collection Survey
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Responses submitted 10/26/2011 22:37:39.
Show responses
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| Timestamp |
10/26/2011 22:37:39 |
| Which sample tube did you just collect? |
Big tube |
| How easy was this sample tube to use for collection? |
3 |
| Do you have any gum bleeding or gingivitis (gum inflammation)? |
No |
| Did you collect this sample all at once, or at multiple timepoints? |
All at once (in more than 10 minutes) |
| What time of day did you collect saliva? |
Very first thing in the morning, right after waking & before eating or drinking anything |
| Did you chew gum shortly before collection? |
No, no gum shortly before collection |
| When was the last time you brushed and/or flossed? |
More than 12 hours before collection |
| Did you eat anything between the last time you brushed and/or flossed and the saliva collection? |
No, no eating between last brushing and collection |
| When was the last time you used mouthwash? |
More than 12 hours before collection |
| Did you eat anything between the last time you used mouthwash and the saliva collection? |
Yes, some eating between last usage of mouthwash and collection |
| If you have any specific comments regarding the sample you collected with this sample tube, please note them here. |
No comments |
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PGP Fall/Winter 2011 Saliva Kit: Small Tube Collection Survey
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Responses submitted 10/26/2011 22:39:35.
Show responses
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| Timestamp |
10/26/2011 22:39:35 |
| Which sample tube did you just collect? |
Small tube |
| How easy was this sample tube to use for collection? |
5 |
| Do you have any gum bleeding or gingivitis (gum inflammation)? |
No |
| Did you collect this sample all at once, or at multiple timepoints? |
All at once (in 5 to 10 minutes) |
| What time of day did you collect saliva? |
Very first thing in the morning, right after waking & before eating or drinking anything |
| Did you chew gum shortly before collection? |
No, no gum shortly before collection |
| When was the last time you brushed and/or flossed? |
6 - 12 hours before collection |
| Did you eat anything between the last time you brushed and/or flossed and the saliva collection? |
No, no eating between last brushing and collection |
| When was the last time you used mouthwash? |
More than 12 hours before collection |
| Did you eat anything between the last time you used mouthwash and the saliva collection? |
Yes, some eating between last usage of mouthwash and collection |
| If you have any specific comments regarding the sample you collected with this sample tube, please note them here. |
No Comments |
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PGP Participant Survey
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Responses submitted 4/25/2012 15:46:31.
Show responses
|
| Timestamp |
4/25/2012 15:46:31 |
| Year of birth |
40-49 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. |
Dextracardia, craniopharyngioma |
| Disease/trait: Onset |
Congenital / present at birth |
| Disease/trait: Rarity |
Very rare/uncommon |
| Disease/trait: Severity |
Low severity disease |
| Disease/trait: Relative enrollment |
No |
| Disease/trait: Diagnosis |
Yes |
| Disease/trait: Genetic confirmation |
No |
| Disease/trait: Documentation |
Yes |
| Disease/trait: Documentation description |
I have xray films that confirm the right sided heart. |
| Sex/Gender |
Female |
| Race/ethnicity |
White |
| Maternal grandmother: Country of origin |
United States |
| Paternal grandmother: Country of origin |
United States |
| Paternal grandfather: Country of origin |
United Kingdom |
| Maternal grandfather: Country of origin |
Ireland |
| 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 |
4 |
| Blood sample |
Yes |
| Saliva sample |
Yes |
| Microbiome samples |
Yes |
| Tissue samples from surgery |
No |
| Tissue samples from autopsy |
Yes |
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PGP Participant Survey
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Responses submitted 10/21/2012 19:39:40.
Show responses
|
| Timestamp |
10/21/2012 19:39:40 |
| Year of birth |
40-49 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. |
Dextrocardia - answers below referring to this trait
Craniopharyngioma
Rheumatoid Arthritis |
| Disease/trait: Onset |
Congenital / present at birth |
| Disease/trait: Rarity |
Very rare/uncommon |
| Disease/trait: Severity |
Low severity disease |
| Disease/trait: Relative enrollment |
No |
| Disease/trait: Diagnosis |
Yes |
| Disease/trait: Genetic confirmation |
No |
| Disease/trait: Documentation |
Yes |
| Disease/trait: Documentation description |
I have several ECGs and chest xrays |
| Sex/Gender |
Female |
| Race/ethnicity |
White |
| Maternal grandmother: Country of origin |
Ireland |
| Paternal grandmother: Country of origin |
United States |
| Paternal grandfather: Country of origin |
United States |
| Maternal grandfather: Country of origin |
Ireland |
| 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 |
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: Cancers
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Responses submitted 10/21/2012 19:40:59.
Show responses
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| Timestamp |
10/21/2012 19:40:59 |
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PGP Trait & Disease Survey 2012: Endocrine, Metabolic, Nutritional, and Immunity
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Responses submitted 10/21/2012 19:42:18.
Show responses
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| Timestamp |
10/21/2012 19:42:18 |
| Have you ever been diagnosed with any of the following conditions? |
Thyroid nodule(s), Hypothyroidism, Growth hormone deficiency, Polycystic ovary syndrome (PCOS) |
| Other condition not listed here? |
panhypopituitarism |
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PGP Trait & Disease Survey 2012: Blood
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Responses submitted 10/21/2012 19:43:20.
Show responses
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| Timestamp |
10/21/2012 19:43:20 |
| Have you ever been diagnosed with any of the following conditions? |
Iron deficiency anemia, Other thrombophilia (includes antiphospholipid syndrome) |
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PGP Trait & Disease Survey 2012: Nervous System
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Responses submitted 10/21/2012 19:44:43.
Show responses
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| Timestamp |
10/21/2012 19:44:43 |
| Have you ever been diagnosed with one of the following conditions? |
Cluster headaches, Carpal tunnel syndrome |
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PGP Trait & Disease Survey 2012: Vision and hearing
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Responses submitted 10/21/2012 19:46:08.
Show responses
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| Timestamp |
10/21/2012 19:46:08 |
| Have you ever been diagnosed with one of the following conditions? |
Myopia (Nearsightedness), Astigmatism, Dry eye syndrome |
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PGP Trait & Disease Survey 2012: Circulatory System
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Responses submitted 10/21/2012 19:47:13.
Show responses
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| Timestamp |
10/21/2012 19:47:13 |
| Have you ever been diagnosed with one of the following conditions? |
Raynaud's phenomenon |
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PGP Trait & Disease Survey 2012: Respiratory System
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Responses submitted 10/21/2012 19:48:00.
Show responses
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| Timestamp |
10/21/2012 19:48:00 |
| Have you ever been diagnosed with any of the following conditions? |
Nasal polyps, Asthma |
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PGP Trait & Disease Survey 2012: Digestive System
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Responses submitted 10/21/2012 19:48:49.
Show responses
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| Timestamp |
10/21/2012 19:48:49 |
| Have you ever been diagnosed with any of the following conditions? |
Impacted tooth, Dental cavities, Temporomandibular joint (TMJ) disorder, Gastroesophageal reflux disease (GERD) |
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PGP Trait & Disease Survey 2012: Genitourinary Systems
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Responses submitted 10/21/2012 19:49:42.
Show responses
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| Timestamp |
10/21/2012 19:49:42 |
| Have you ever been diagnosed with any of the following conditions? |
Urinary tract infection (UTI), Female infertility |
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PGP Trait & Disease Survey 2012: Skin and Subcutaneous Tissue
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Responses submitted 10/21/2012 19:50:41.
Show responses
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| Timestamp |
10/21/2012 19:50:41 |
| Have you ever been diagnosed with any of the following conditions? |
Eczema, Skin tags, Hyperhidrosis (excessive sweating) |
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PGP Trait & Disease Survey 2012: Musculoskeletal System and Connective Tissue
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Responses submitted 10/21/2012 19:51:30.
Show responses
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| Timestamp |
10/21/2012 19:51:30 |
| Have you ever been diagnosed with any of the following conditions? |
Rheumatoid arthritis |
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PGP Trait & Disease Survey 2012: Congenital Traits and Anomalies
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Responses submitted 10/21/2012 19:52:33.
Show responses
|
| Timestamp |
10/21/2012 19:52:33 |
| Have you ever been diagnosed with any of the following conditions? |
Congenital heart defect |
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PGP Basic Phenotypes Survey 2015
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Responses submitted 7/7/2017 11:24:46.
Show responses
|
| Timestamp |
7/7/2017 11:24:46 |
| 1.1 — Blood Type |
A + |
| 1.2 — Height |
5'2" |
| 1.3 — Weight |
190 |
| 2.1 — Left Eye (Photograph Number) (full-size image: https://goo.gl/XQ2Voh) |
19 |
| 2.2 — Right Eye (Photograph Number) (full-size image: https://goo.gl/XQ2Voh) |
20 |
| 2.3 — Left Eye Color - Text Description |
Brown w gold flecks |
| 2.4 — Right Eye Color - Text Description |
Brown with gold flecks |
| 3.1 — What is your natural hair color currently, when without artificial color or dye? |
brown |
| 3.2 — Hair Color - Text Description |
Brownishred |
| 1.4 — Handedness |
Right |
