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 |
PGP Participant Survey
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Responses submitted 10/21/2011 20:48:00.
Show responses
|
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 |
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 |
PGP Fall/Winter 2011 Saliva Kit: Small Tube Collection Survey
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Responses submitted 10/26/2011 22:39:35.
Show responses
|
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 |
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 |
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 |
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 |
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 |
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) |
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 |
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 |
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 |
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 |
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) |
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 |
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) |
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 |
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 |
PGP Basic Phenotypes Survey 2015
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Responses submitted 7/7/2017 11:24:46.
Show responses
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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 |