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PGP Participant Survey
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Responses submitted 7/16/2011 13:59:12.
Show responses
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| Timestamp |
7/16/2011 13:59:12 |
| Year of birth |
50-59 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. |
Paroxysmal atrial fibrillation with rapid ventricular response. I have had three emergency electrical cardioversions for the condition, but I have been free from recurrences since starting the extended release form of propafenone (325 mg capsule BID). My maternal grandfather died from stroke at about age 72 in the early 1960s in rural Texas, & was being treated with digitalis for a diagnosis that we do not currently have on record. My mother's fraternal twin sister has been off & on coumadin for atrial fib, & my mother, myself & several others in the family show a 33.9% risk for atrial fib projected by 23andMe. The inheritance pattern is clearly my maternal line. |
| Disease/trait: Onset |
40-49 years of age |
| Disease/trait: Rarity |
Fairly common |
| 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 |
Cardioversion records are available in my Google Health account, & I have already made my 23andMe raw data available to the PGP. |
| 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? |
Yes, I have uploaded 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: Circulatory System
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Responses submitted 11/22/2012 15:27:51.
Show responses
|
| Timestamp |
11/22/2012 15:27:51 |
| Have you ever been diagnosed with one of the following conditions? |
Atrial fibrillation, Cardiac arrhythmia |
|
PGP Participant Survey
|
Responses submitted 11/22/2012 15:41:16.
Show responses
|
| Timestamp |
11/22/2012 15:41:16 |
| Year of birth |
50-59 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. |
Atrial fibrillation with rapid ventricular response. Currently dependent on propafenone to suppress the malignant. Recurrence of atrial fibrillation invariably leads to rapid ventricular response requiring emergency cardioversion (will not convert with IV medication regimen). The invariable rapid ventricular response is the component that distinguishes it from "typical" atrial fibrillation. Atrial fibrillation is always malignant for me, which is why I am dependent on propafenone extended release (a very expensive medication) versus anticoagulation with Coumadin. The Coumadin can reduce the stroke risk, but does nothing to control the tachycardia of 130-140 associated with the atrial fibrillation. I live a normal life as long as I have access to the propfenone extended release. This may be a problem in the near future. |
| Disease/trait: Onset |
40-49 years of age |
| Disease/trait: Rarity |
Uncommon |
| Disease/trait: Severity |
Moderate severity disease |
| Disease/trait: Relative enrollment |
No |
| Disease/trait: Diagnosis |
Yes |
| Disease/trait: Genetic confirmation |
No |
| Disease/trait: Documentation |
Yes |
| Disease/trait: Documentation description |
Two full reports by cardiologists of emergency cardioversions. Another report available by submission of a HIPAA request form. |
| 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? |
Yes, I have uploaded 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 |
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 2/3/2013 23:42:05.
Show responses
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| Timestamp |
2/3/2013 23:42:05 |
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PGP Trait & Disease Survey 2012: Blood
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Responses submitted 2/3/2013 23:43:08.
Show responses
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| Timestamp |
2/3/2013 23:43:08 |
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PGP Trait & Disease Survey 2012: Vision and hearing
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Responses submitted 2/3/2013 23:46:59.
Show responses
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| Timestamp |
2/3/2013 23:46:59 |
| Have you ever been diagnosed with one of the following conditions? |
Central serous retinopathy, Presbyopia |
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PGP Trait & Disease Survey 2012: Respiratory System
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Responses submitted 2/3/2013 23:47:37.
Show responses
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| Timestamp |
2/3/2013 23:47:37 |
| Have you ever been diagnosed with any of the following conditions? |
Deviated septum, Chronic tonsillitis |
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PGP Trait & Disease Survey 2012: Digestive System
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Responses submitted 2/3/2013 23:50:08.
Show responses
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| Timestamp |
2/3/2013 23:50:08 |
| Have you ever been diagnosed with any of the following conditions? |
Impacted tooth, Dental cavities, Gingivitis, Geographic tongue, Fissured tongue, Gastroesophageal reflux disease (GERD), Inguinal hernia |
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PGP Trait & Disease Survey 2012: Musculoskeletal System and Connective Tissue
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Responses submitted 2/3/2013 23:50:57.
Show responses
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| Timestamp |
2/3/2013 23:50:57 |
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PGP Trait & Disease Survey 2012: Endocrine, Metabolic, Nutritional, and Immunity
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Responses submitted 2/3/2013 23:51:55.
Show responses
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| Timestamp |
2/3/2013 23:51:55 |
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PGP Trait & Disease Survey 2012: Nervous System
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Responses submitted 2/3/2013 23:52:35.
Show responses
|
| Timestamp |
2/3/2013 23:52:35 |
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PGP Trait & Disease Survey 2012: Congenital Traits and Anomalies
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Responses submitted 12/14/2013 13:36:51.
Show responses
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| Timestamp |
12/14/2013 13:36:51 |
| Other condition not listed here? |
None |
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PGP Trait & Disease Survey 2012: Skin and Subcutaneous Tissue
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Responses submitted 12/17/2013 1:25:49.
Show responses
|
| Timestamp |
12/17/2013 1:25:49 |
| Have you ever been diagnosed with any of the following conditions? |
Psoriasis |
| Other condition not listed here? |
Inverse psoriasis |
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PGP Trait & Disease Survey 2012: Genitourinary Systems
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Responses submitted 12/17/2013 1:26:39.
Show responses
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| Timestamp |
12/17/2013 1:26:39 |
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PGP Basic Phenotypes Survey 2015
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Responses submitted 8/29/2015 12:10:57.
Show responses
|
| Timestamp |
8/29/2015 12:10:57 |
| 1.1 — Blood Type |
A + |
| 1.2 — Height |
5'10" |
| 1.3 — Weight |
205 |
| 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, both eyes somewhere between photo 13 and 14, with slightly more brown around the pupil than 13, but less than 14 |
| 2.4 — Right Eye Color - Text Description |
same |
| 2.5 —Comments |
Maternal line, strong history of glaucoma. Per 23andMe, my daughter's risk of macular degeneration is 5 times greater than average. My eyes are considerably smaller than average, and I was prescribed eyeglasses for the first time at age 18. As the years have passed, the Rx has gotten stronger and stronger |
| 3.1 — What is your natural hair color currently, when without artificial color or dye? |
gray |
| 3.2 — Hair Color - Text Description |
Gray |
| 3.3 — Comments |
Typical brunette. Lighter brown as a child, darkening as I aged until appearance of first gray in circa age 40. Very grey now at age 62 (my hair is almost as grey as my 90 year old mother). Oddly, my younger brother at age 60 has very little grey. |
| 4.1 — Any final thoughts? |
My overall physical traits phenotype is much closer to my father than my mother. Currently trying to sort out HLA inheritance. Received assistance with HLA*IMP software which imputed these haplotypes from my whole genome VCF file (with probabilities) -
allele1 allele2 probability
HLA-A* 03:01 26:01 100% 55%
HLA-B* 38:01 40:01 96% 86%
HLA-C* 12:03 07:02 100% 99%
HLA-DRB1* 04:04 09:01 82% 100%
HLA-DQA* 03:01 02:01 99% 76%
HLA-DQB1* 03:02 03:03 99% 98%
HLA-DPB* 04:04 09:01 82% 100%
The HLA*IMP software was done for me, so I am quite anxious to know how reliable these haplotypes might be. Potential implications for autoimmune disorders in my family (just started treatment for psoriatic arthritis after 5+ years of odd signs & symptoms - diagnosis based on lab work and X-rays). This and cytochrome P450 imputations are perhaps the most important info that a participant can derive from whole genome results. Can we consider blanket application to all participants??
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| 1.4 — Handedness |
Right |
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Harvard PGP: COVID-19 Demographics Survey
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Responses submitted 3/23/2020 23:42:55.
Show responses
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| Timestamp |
3/23/2020 23:42:55 |
| What is the zip code of your primary residence? |
81505 |
| Do have another residence where you spend more than 30 days a year? |
I typically more than 30 days a year away from my primary residence, but in several different locations where family reside. |
| What is your gender? |
Male |
| Select all the following that apply to your current living arrangements. |
Live with partner/spouse, Other, My spouse's grandchildren, aged 11 & 4, spend two days and one night at my residence. Both of their parents are school teachers. |
| What is your race? Pick all that apply. |
White |
| What is your ethnicity? |
Not Hispanic or Latino or Spanish Origin |
| Select which one of the following applies to you and your birth status. |
None of the above |
| Have you ever been diagnosed with any of the following? [Asthma (Adult)] |
No |
| Have you ever been diagnosed with any of the following? [Asthma (Childhood)] |
No |
| Have you ever been diagnosed with any of the following? [Chronic obstructive pulmonary disease (COPD)] |
No |
| Have you ever been diagnosed with any of the following? [Emphysema] |
No |
| Have you ever been diagnosed with any of the following? [Chronic bronchitis] |
No |
| Have you ever been diagnosed with any of the following? [Pneumonia] |
No |
| Have you ever been diagnosed with any of the following? [Type 1 Diabetes] |
No |
| Have you ever been diagnosed with any of the following? [Type 2 Diabetes] |
No |
| Have you ever smoked tobacco products? |
No |
| Have you ever used e-cigarettes (e.g. JUUL, Vuse, MarkTen)? |
No |
| Which one of the following best describes your employment status for the past 3 months? |
Retired |
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Harvard PGP: COVID-19 Health Assessment for Week of 22-28 March 2020
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Responses submitted 3/23/2020 23:48:30.
Show responses
|
| Timestamp |
3/23/2020 23:48:30 |
| Since Jan 1, 2020, have you been ill with a cold or flu-like illness? |
No |
| Since Jan 1, 2020, have you experienced any of the following symptoms? [Persistent high fever of 38°C (100.4°F) or higher, lasting for a day or more] |
No |
| Since Jan 1, 2020, have you experienced any of the following symptoms? [Feeling cold, chills or shivers] |
No |
| Since Jan 1, 2020, have you experienced any of the following symptoms? [Headache] |
No |
| Since Jan 1, 2020, have you experienced any of the following symptoms? [Aches all over the body] |
No |
| Since Jan 1, 2020, have you experienced any of the following symptoms? [Cough] |
No |
| Since Jan 1, 2020, have you experienced any of the following symptoms? [Rapid breathing] |
No |
| Since Jan 1, 2020, have you experienced any of the following symptoms? [Shortness of breath] |
No |
| Since Jan 1, 2020, have you experienced any of the following symptoms? [Wheezing or chest tightness] |
No |
| Since Jan 1, 2020, have you experienced any of the following symptoms? [Persistent pain or pressure in the chest] |
No |
| Since Jan 1, 2020, have you experienced any of the following symptoms? [Bluish lips or face] |
No |
| Since Jan 1, 2020, have you experienced any of the following symptoms? [Dizziness] |
No |
| Since Jan 1, 2020, have you experienced any of the following symptoms? [Confusion or inability to arouse] |
No |
| Since Jan 1, 2020, have you experienced any of the following symptoms? [Running nose] |
No |
| Since Jan 1, 2020, have you experienced any of the following symptoms? [Sore throat] |
No |
| Since Jan 1, 2020, have you experienced any of the following symptoms? [Nausea] |
No |
| Since Jan 1, 2020, have you experienced any of the following symptoms? [Vomiting] |
No |
| Since Jan 1, 2020, have you experienced any of the following symptoms? [Abdominal pain] |
No |
| Since Jan 1, 2020, have you experienced any of the following symptoms? [Diarrhea] |
No |
| Since Jan 1, 2020, have you experienced any of the following symptoms? [Pink eye (conjunctivitis)] |
No |
| Since Jan 1, 2020, have you experienced any of the following symptoms? [Loss of sense of smell] |
No |
| Since Jan 1, 2020, have you experienced any of the following symptoms? [Loss of sense of taste] |
No |
| Are you currently experiencing any of the following symptoms? [Persistent high fever of 38°C (100.4°F) or higher, lasting for a day or more] |
No |
| Are you currently experiencing any of the following symptoms? [Feeling cold, chills or shivers] |
No |
| Are you currently experiencing any of the following symptoms? [Headache] |
No |
| Are you currently experiencing any of the following symptoms? [Aches all over the body] |
No |
| Are you currently experiencing any of the following symptoms? [Cough] |
No |
| Are you currently experiencing any of the following symptoms? [Rapid breathing] |
No |
| Are you currently experiencing any of the following symptoms? [Shortness of breath] |
No |
| Are you currently experiencing any of the following symptoms? [Wheezing or chest tightness] |
No |
| Are you currently experiencing any of the following symptoms? [Persistent pain or pressure in the chest] |
No |
| Are you currently experiencing any of the following symptoms? [Bluish lips or face] |
No |
| Are you currently experiencing any of the following symptoms? [Dizziness] |
No |
| Are you currently experiencing any of the following symptoms? [Confusion or inability to arouse] |
No |
| Are you currently experiencing any of the following symptoms? [Running nose] |
No |
| Are you currently experiencing any of the following symptoms? [Sore throat] |
No |
| Are you currently experiencing any of the following symptoms? [Nausea] |
No |
| Are you currently experiencing any of the following symptoms? [Vomiting] |
No |
| Are you currently experiencing any of the following symptoms? [Abdominal Pain] |
No |
| Are you currently experiencing any of the following symptoms? [Diarrhea] |
No |
| Are you currently experiencing any of the following symptoms? [Pink eye (conjunctivitis)] |
No |
| Are you currently experiencing any of the following symptoms? [Loss of sense of smell] |
No |
| Are you currently experiencing any of the following symptoms? [Loss of sense of taste] |
No |
| Are you regularly taking any of the following medications? Please choose all those that apply. |
None of these medications |
| Have you been tested for coronavirus (COVID-19) by a medical doctor or other official testing service? |
No, I have not tried to get tested |
| In the past 4 weeks, have you been in close contact with a person who has tested positive for coronavirus (COVID-19)? |
No |
| In the past 4 weeks, have you been in close contact with a person who has symptoms consistent with coronavirus (COVID-19) but has not been tested? |
No |
