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PGP Participant Survey
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Responses submitted 7/17/2011 11:10:50.
Show responses
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| Timestamp |
7/17/2011 11:10:50 |
| Year of birth |
60-69 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 have facioscapulohumeral muscular dystrophy or FSHMD. There are 4 generations known in my family who have the disease. I have lupus anticoagulant. It is kind of a misnomer because it has nothing with lupus eryrathematosis. |
| Disease/trait: Onset |
Congenital / present at birth |
| Disease/trait: Rarity |
Uncommon |
| Disease/trait: Severity |
Moderate severity disease |
| Disease/trait: Relative enrollment |
Maybe |
| Disease/trait: Diagnosis |
Yes |
| Disease/trait: Genetic confirmation |
Yes |
| Disease/trait: Documentation |
Yes |
| Disease/trait: Documentation description |
I have a document from the MD docter. |
| Sex/Gender |
Female |
| Maternal grandmother: Country of origin |
United States |
| Paternal grandmother: Country of origin |
Poland |
| Paternal grandfather: Country of origin |
Poland |
| Maternal grandfather: Country of origin |
United States |
| Enrollment of relatives |
No |
| Enrollment of older individuals |
No |
| 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? |
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 |
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PGP Participant Survey
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Responses submitted 9/26/2011 15:56:25.
Show responses
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| Timestamp |
9/26/2011 15:56:25 |
| 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. |
I have been diagnosed by genetic testing to have FSHMD or fascio scapulo
humeral muscular dystrophy |
| Disease/trait: Onset |
Congenital / present at birth |
| Disease/trait: Rarity |
Uncommon |
| Disease/trait: Severity |
Moderate severity disease |
| Disease/trait: Relative enrollment |
Maybe |
| Disease/trait: Diagnosis |
Yes |
| Disease/trait: Genetic confirmation |
Yes |
| Disease/trait: Documentation |
Yes |
| Disease/trait: Documentation description |
I have confirmation of the disease in my medical records. |
| Sex/Gender |
Female |
| Race/ethnicity |
White |
| Maternal grandmother: Country of origin |
Other / don't know / no response |
| Paternal grandmother: Country of origin |
Germany |
| Paternal grandfather: Country of origin |
Poland |
| Maternal grandfather: Country of origin |
United States |
| Enrollment of relatives |
No |
| Enrollment of older individuals |
No |
| Enrollment of parents |
No |
| Have you uploaded genetic data to your PGP participant profile? |
Yes, I have uploaded genetic data |
| 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 |
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PGP Participant Survey
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Responses submitted 11/25/2011 17:53:11.
Show responses
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| Timestamp |
11/25/2011 17:53:11 |
| 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. |
fascioscapulohumeral muscular dystrophy |
| Disease/trait: Onset |
Congenital / present at birth |
| Disease/trait: Rarity |
Uncommon |
| Disease/trait: Severity |
Moderate severity disease |
| Disease/trait: Relative enrollment |
No |
| Disease/trait: Diagnosis |
Yes |
| Disease/trait: Genetic confirmation |
Yes |
| Disease/trait: Documentation |
Yes |
| Disease/trait: Documentation description |
I can get the information from my doctor |
| Sex/Gender |
Female |
| Race/ethnicity |
White |
| Maternal grandmother: Country of origin |
United States |
| Paternal grandmother: Country of origin |
Germany |
| Paternal grandfather: Country of origin |
Poland |
| Maternal grandfather: Country of origin |
United States |
| Enrollment of relatives |
No |
| Enrollment of older individuals |
No |
| Enrollment of parents |
No |
| 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? |
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 2/8/2012 11:37:14.
Show responses
|
| Timestamp |
2/8/2012 11:37:14 |
| 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. |
facioscapulohumeral muscular dystrophy |
| Disease/trait: Onset |
Congenital / present at birth |
| Disease/trait: Rarity |
Uncommon |
| Disease/trait: Severity |
Moderate severity disease |
| Disease/trait: Relative enrollment |
No |
| Disease/trait: Diagnosis |
Yes |
| Disease/trait: Genetic confirmation |
Yes |
| Disease/trait: Documentation |
No |
| Sex/Gender |
Female |
| Race/ethnicity |
White |
| Maternal grandmother: Country of origin |
United States |
| Paternal grandmother: Country of origin |
Poland |
| Paternal grandfather: Country of origin |
Poland |
| Maternal grandfather: Country of origin |
United States |
| Enrollment of relatives |
No |
| Enrollment of older individuals |
No |
| 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? |
Yes |
| Uploaded health records: Update status |
No |
| Uploaded health records: Extensiveness |
3 |
| Blood sample |
Yes |
| Saliva sample |
Yes |
| Microbiome samples |
Yes |
| Tissue samples from surgery |
No |
| Tissue samples from autopsy |
Yes |
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PGP Trait & Disease Survey 2012: Musculoskeletal System and Connective Tissue
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Responses submitted 12/8/2012 9:17:48.
Show responses
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| Timestamp |
12/8/2012 9:17:48 |
| Have you ever been diagnosed with any of the following conditions? |
Tennis elbow, Plantar fasciitis, Scoliosis |
| Other condition not listed here? |
muscular dystrophy |
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PGP Trait & Disease Survey 2012: Vision and hearing
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Responses submitted 12/8/2012 9:23:53.
Show responses
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| Timestamp |
12/8/2012 9:23:53 |
| Have you ever been diagnosed with one of the following conditions? |
Age-related cataract, Astigmatism |
| Other condition not listed here? |
muscular dystrophy (FSHMD) related hearing loss |
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PGP Trait & Disease Survey 2012: Circulatory System
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Responses submitted 12/8/2012 9:24:37.
Show responses
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| Timestamp |
12/8/2012 9:24:37 |
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PGP Trait & Disease Survey 2012: Blood
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Responses submitted 12/8/2012 9:25:47.
Show responses
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| Timestamp |
12/8/2012 9:25:47 |
| Have you ever been diagnosed with any of the following conditions? |
Iron deficiency anemia |
| Other condition not listed here? |
lupus anticoagulant |
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PGP Trait & Disease Survey 2012: Skin and Subcutaneous Tissue
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Responses submitted 12/8/2012 9:26:37.
Show responses
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| Timestamp |
12/8/2012 9:26:37 |
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PGP Trait & Disease Survey 2012: Cancers
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Responses submitted 12/8/2012 9:27:24.
Show responses
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| Timestamp |
12/8/2012 9:27:24 |
| Have you ever been diagnosed with one of the following conditions? |
Uterine fibroids |
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PGP Trait & Disease Survey 2012: Endocrine, Metabolic, Nutritional, and Immunity
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Responses submitted 12/8/2012 9:28:04.
Show responses
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| Timestamp |
12/8/2012 9:28:04 |
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PGP Trait & Disease Survey 2012: Respiratory System
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Responses submitted 12/8/2012 9:28:53.
Show responses
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| Timestamp |
12/8/2012 9:28:53 |
| Have you ever been diagnosed with any of the following conditions? |
Nasal polyps, Allergic rhinitis, Asthma |
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PGP Trait & Disease Survey 2012: Digestive System
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Responses submitted 12/8/2012 9:29:49.
Show responses
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| Timestamp |
12/8/2012 9:29:49 |
| Have you ever been diagnosed with any of the following conditions? |
Impacted tooth, Dental cavities, Gingivitis |
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PGP Trait & Disease Survey 2012: Genitourinary Systems
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Responses submitted 12/8/2012 9:31:03.
Show responses
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| Timestamp |
12/8/2012 9:31:03 |
| Have you ever been diagnosed with any of the following conditions? |
Urinary tract infection (UTI), Uterine prolapse |
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PGP Trait & Disease Survey 2012: Nervous System
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Responses submitted 12/8/2012 9:32:15.
Show responses
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| Timestamp |
12/8/2012 9:32:15 |
| Have you ever been diagnosed with one of the following conditions? |
Muscular dystrophy |
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PGP Trait & Disease Survey 2012: Congenital Traits and Anomalies
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Responses submitted 12/8/2012 9:33:12.
Show responses
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| Timestamp |
12/8/2012 9:33:12 |
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PGP Trait & Disease Survey 2012: Blood
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Responses submitted 1/5/2013 10:32:58.
Show responses
|
| Timestamp |
1/5/2013 10:32:58 |
| Have you ever been diagnosed with any of the following conditions? |
Iron deficiency anemia |
| Other condition not listed here? |
lupus anticoagulant |
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PGP Trait & Disease Survey 2012: Musculoskeletal System and Connective Tissue
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Responses submitted 6/21/2014 11:59:46.
Show responses
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| Timestamp |
6/21/2014 11:59:46 |
| Have you ever been diagnosed with any of the following conditions? |
Plantar fasciitis, Scoliosis |
| Other condition not listed here? |
FSH muscular dystrophy |
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PGP Trait & Disease Survey 2012: Endocrine, Metabolic, Nutritional, and Immunity
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Responses submitted 6/21/2014 12:07:02.
Show responses
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| Timestamp |
6/21/2014 12:07:02 |
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PGP Trait & Disease Survey 2012: Blood
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Responses submitted 6/21/2014 12:08:12.
Show responses
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| Timestamp |
6/21/2014 12:08:12 |
| Have you ever been diagnosed with any of the following conditions? |
Iron deficiency anemia |
| Other condition not listed here? |
lupus anticoagulant |