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PGP Participant Survey
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Responses submitted 7/16/2011 21:54:55.
Show responses
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| Timestamp |
7/16/2011 21:54:55 |
| 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. |
Though I am only 52, I have experienced a number of significant medical issues that may well be characterized as rare or severe:
At 28 I was diagnosed with massive brain bleed and underwent a craniotomy for a partial resection of my left parietal lobe. Though there was a significant loss of brain due to both the bleed and surgery, there were no obvious neurological after effects, leading my neurologist to conclude that the bleed was congenital (AVM) and had been present since birth, resulting in constant small damage, and allowing my brain to rewire itself as it developed (rather than the trauma that would result if the same area of my brain were damaged in adulthood all at once.
At 47 I was diagnosed with Kidney Cancer (renal cell carcinoma) via an incidental finding during an appendectomy follow-up.
At 48, while recovering from the Kidney Cancer surgery, I began to have movement difficulties and was eventually diagnosed with a 6.5cm meningioma that was removed via craniotomy (and was located proximate to the previous AVM surgery) - subsequently additional small tumors (also meningioma or perhaps schwanoma) have been discovered via imaging.
And last, but not least, I am transgender (MtF), an awareness I have had since I was approx. 2 years old (and well before I had the vocabulary or analytical tools to understand what it meant.) |
| Disease/trait: Onset |
Congenital / present at birth |
| Disease/trait: Rarity |
Very rare/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 |
With respect to my meningiomas, I underwent an NF2 test (which turned out to be negative), but I have all of my brain MRI's available as DICOM files, showing both the meningiomas as well as the 'hole' left from the AVM resection. I would also be willing to share my doctor's notes
With respect to my kidney cancer, i have CT scan files available as DICOM files, and would also be willing to share my doctor's notes.
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| Sex/Gender |
Female |
| Race/ethnicity |
White |
| Maternal grandmother: Country of origin |
Poland |
| Paternal grandmother: Country of origin |
Austria |
| Paternal grandfather: Country of origin |
Romania |
| Maternal grandfather: Country of origin |
Ukraine |
| Enrollment of relatives |
No |
| Enrollment of older individuals |
Yes |
| 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? |
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 |
Yes |
| Tissue samples from autopsy |
Yes |
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PGP Trait & Disease Survey 2012: Cancers
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Responses submitted 11/11/2012 20:03:28.
Show responses
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| Timestamp |
11/11/2012 20:03:28 |
| Have you ever been diagnosed with one of the following conditions? |
Kidney cancer |
| Other condition not listed here? |
Meningiomas (non cancer brain tumor) |
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PGP Trait & Disease Survey 2012: Endocrine, Metabolic, Nutritional, and Immunity
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Responses submitted 11/11/2012 20:05:03.
Show responses
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| Timestamp |
11/11/2012 20:05:03 |
| Have you ever been diagnosed with any of the following conditions? |
Thyroid nodule(s), Hypothyroidism, Hashimoto's thyroiditis |
| Other condition not listed here? |
CVID igg1 deficiency and selective polysaccharide immune deficiency |
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PGP Trait & Disease Survey 2012: Blood
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Responses submitted 11/11/2012 20:06:36.
Show responses
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| Timestamp |
11/11/2012 20:06:36 |
| Other condition not listed here? |
Been diagnosed as anemic multiple times but no further details provided or studies done |
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PGP Trait & Disease Survey 2012: Nervous System
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Responses submitted 11/11/2012 20:07:40.
Show responses
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| Timestamp |
11/11/2012 20:07:40 |
| Have you ever been diagnosed with one of the following conditions? |
Cluster headaches, Migraine with aura, Migraine without aura |
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PGP Trait & Disease Survey 2012: Vision and hearing
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Responses submitted 11/11/2012 22:04:05.
Show responses
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| Timestamp |
11/11/2012 22:04:05 |
| Have you ever been diagnosed with one of the following conditions? |
Myopia (Nearsightedness), Astigmatism, Tinnitus |
| Other condition not listed here? |
Have also been diagnosed with vestibular disorder similar to Meniere but with perfect hearing (also no hearing loss with tinnitus) |
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PGP Trait & Disease Survey 2012: Circulatory System
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Responses submitted 11/11/2012 22:05:33.
Show responses
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| Timestamp |
11/11/2012 22:05:33 |
| Have you ever been diagnosed with one of the following conditions? |
Mitral valve prolapse, Cardiac arrhythmia |
| Other condition not listed here? |
Also taccacardia |
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PGP Trait & Disease Survey 2012: Respiratory System
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Responses submitted 11/11/2012 22:05:55.
Show responses
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| Timestamp |
11/11/2012 22:05:55 |
| Have you ever been diagnosed with any of the following conditions? |
Deviated septum, Nasal polyps, Chronic sinusitis, Allergic rhinitis, Asthma |
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PGP Trait & Disease Survey 2012: Digestive System
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Responses submitted 11/11/2012 22:06:52.
Show responses
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| Timestamp |
11/11/2012 22:06:52 |
| Have you ever been diagnosed with any of the following conditions? |
Impacted tooth, Dental cavities, Gingivitis, Canker sores (oral ulcers), Gastroesophageal reflux disease (GERD), Appendicitis, Hiatal hernia |
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PGP Trait & Disease Survey 2012: Genitourinary Systems
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Responses submitted 11/11/2012 22:07:22.
Show responses
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| Timestamp |
11/11/2012 22:07:22 |
| Have you ever been diagnosed with any of the following conditions? |
Kidney stones |
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PGP Trait & Disease Survey 2012: Skin and Subcutaneous Tissue
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Responses submitted 11/11/2012 22:08:02.
Show responses
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| Timestamp |
11/11/2012 22:08:02 |
| Have you ever been diagnosed with any of the following conditions? |
Dandruff, Acne |
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PGP Trait & Disease Survey 2012: Musculoskeletal System and Connective Tissue
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Responses submitted 11/11/2012 22:08:45.
Show responses
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| Timestamp |
11/11/2012 22:08:45 |
| Have you ever been diagnosed with any of the following conditions? |
Spinal stenosis, Sciatica, Bone spurs, Plantar fasciitis, Flatfeet, Postural kyphosis, Scoliosis |
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PGP Trait & Disease Survey 2012: Congenital Traits and Anomalies
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Responses submitted 11/11/2012 22:09:13.
Show responses
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| Timestamp |
11/11/2012 22:09:13 |
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PGP Basic Phenotypes Survey 2015
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Responses submitted 6/20/2016 12:14:16.
Show responses
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| Timestamp |
6/20/2016 12:14:16 |
| 1.1 — Blood Type |
A + |
| 1.2 — Height |
6'0" |
| 1.3 — Weight |
210 |
| 1.4 — Comments |
Although I am right handed, my father was left handed and I have some measure of comfort doing things with my opposite hand. In addition what is believed to be a congenital brain injury (AVM) in the left parietal lobe may have resulted in the migration of certain functions to the opposite lobe (hypothesis by neuropsychologist at Brown University after work up in the early '90s) |
| 2.1 — Left Eye (Photograph Number) (full-size image: https://goo.gl/XQ2Voh) |
16 |
| 2.2 — Right Eye (Photograph Number) (full-size image: https://goo.gl/XQ2Voh) |
16 |
| 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? |
red |
| 3.2 — Hair Color - Text Description |
Reddish Brown |
| 3.3 — Comments |
photos from my childhood show my hair was very blond and it was often described to me as 'strawberry blonde'... as i've gotten older it has gotten darker. my eyebrows are very blonde, my arm hair is very blonde, but the hair on the rest of my body is darker. and the hair on my head is fairly tinged with grey. |
| 1.4 — Handedness |
Right |
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Harvard PGP: COVID-19 Demographics Survey
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Responses submitted 3/23/2020 22:46:26.
Show responses
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| Timestamp |
3/23/2020 22:46:26 |
| What is the zip code of your primary residence? |
95124 |
| Do have another residence where you spend more than 30 days a year? |
No |
| What is your age (in years)? |
62 |
| What is your gender? |
Transgender |
| Select all the following that apply to your current living arrangements. |
Live alone |
| 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)] |
Yes |
| Have you ever been diagnosed with any of the following? [Asthma (Childhood)] |
Yes |
| 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? |
Employed: Working 1-39 hrs per week |
| Select the category that best describes your occupation. |
Management |
| What is the zip code of your primary workplace/worksite? |
95124 |
| Do you have a secondary workplace/worksite where you work more than 30 days a year? |
No |
| If a vaccine against coronovirus (COVID-19) would reach the stage where it must be tested for safety and efficacy in humans, would you - assuming that you are eligible - be interested in taking part in that trial? |
Maybe |
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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 22:48:42.
Show responses
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| Timestamp |
3/23/2020 22:48:42 |
| Since Jan 1, 2020, have you been ill with a cold or flu-like illness? |
Yes |
| 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] |
Unknown |
| Since Jan 1, 2020, have you experienced any of the following symptoms? [Feeling cold, chills or shivers] |
Yes |
| Since Jan 1, 2020, have you experienced any of the following symptoms? [Headache] |
Yes |
| Since Jan 1, 2020, have you experienced any of the following symptoms? [Aches all over the body] |
Yes |
| Since Jan 1, 2020, have you experienced any of the following symptoms? [Cough] |
Yes |
| 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] |
Yes |
| Since Jan 1, 2020, have you experienced any of the following symptoms? [Sore throat] |
Yes |
| 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)? |
Don't know |
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Harvard PGP: COVID-19 Health Assessment for Week of 5 April - 11 April 2020
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Responses submitted 4/6/2020 14:00:57.
Show responses
|
| Timestamp |
4/6/2020 14:00:57 |
| Since Jan 1, 2020, have you been ill with a cold or flu-like illness? |
Yes |
| Currently are you experiencing ANY of the above list of symptoms? |
No |
| In the past two weeks, have you experienced ANY of the above list of symptoms? |
Yes |
| In the past 2 weeks, which symptoms have you experienced. [Persistent high fever of 38°C (100.4°F) or higher, lasting for a day or more] |
No |
| In the past 2 weeks, which symptoms have you experienced. [Feeling cold, chills or shivers] |
Yes |
| In the past 2 weeks, which symptoms have you experienced. [Headache] |
Yes |
| In the past 2 weeks, which symptoms have you experienced. [Aches all over the body] |
No |
| In the past 2 weeks, which symptoms have you experienced. [Cough] |
No |
| In the past 2 weeks, which symptoms have you experienced. [Rapid breathing] |
No |
| In the past 2 weeks, which symptoms have you experienced. [Shortness of breath] |
No |
| In the past 2 weeks, which symptoms have you experienced. [Wheezing or chest tightness] |
No |
| In the past 2 weeks, which symptoms have you experienced. [Persistent pain or pressure in the chest] |
No |
| In the past 2 weeks, which symptoms have you experienced. [Bluish lips or face] |
No |
| In the past 2 weeks, which symptoms have you experienced. [Dizziness] |
No |
| In the past 2 weeks, which symptoms have you experienced. [Confusion or inability to arouse] |
No |
| In the past 2 weeks, which symptoms have you experienced. [Running nose] |
No |
| In the past 2 weeks, which symptoms have you experienced. [Sore throat] |
Yes |
| In the past 2 weeks, which symptoms have you experienced. [Nausea] |
No |
| In the past 2 weeks, which symptoms have you experienced. [Vomiting] |
No |
| In the past 2 weeks, which symptoms have you experienced. [Abdominal pain] |
No |
| In the past 2 weeks, which symptoms have you experienced. [Diarrhea] |
No |
| In the past 2 weeks, which symptoms have you experienced. [Pink eye (conjunctivitis)] |
No |
| In the past 2 weeks, which symptoms have you experienced. [Loss of sense of smell] |
No |
| In the past 2 weeks, which symptoms have you experienced. [Loss of sense of taste] |
No |
| Since Jan 1, 2020, to the best of your recollection,have you experienced ANY of the above list of symptoms? |
Yes |
| Since Jan 1, 2020, to the best of your recollection which symptoms have you experienced. [Persistent high fever of 38°C (100.4°F) or higher, lasting for a day or more] |
Unknown |
| Since Jan 1, 2020, to the best of your recollection which symptoms have you experienced. [Feeling cold, chills or shivers] |
Yes |
| Since Jan 1, 2020, to the best of your recollection which symptoms have you experienced. [Headache] |
Yes |
| Since Jan 1, 2020, to the best of your recollection which symptoms have you experienced. [Aches all over the body] |
Yes |
| Since Jan 1, 2020, to the best of your recollection which symptoms have you experienced. [Cough] |
Yes |
| Since Jan 1, 2020, to the best of your recollection which symptoms have you experienced. [Rapid breathing] |
No |
| Since Jan 1, 2020, to the best of your recollection which symptoms have you experienced. [Shortness of breath] |
No |
| Since Jan 1, 2020, to the best of your recollection which symptoms have you experienced. [Wheezing or chest tightness] |
No |
| Since Jan 1, 2020, to the best of your recollection which symptoms have you experienced. [Persistent pain or pressure in the chest] |
No |
| Since Jan 1, 2020, to the best of your recollection which symptoms have you experienced. [Bluish lips or face] |
No |
| Since Jan 1, 2020, to the best of your recollection which symptoms have you experienced. [Dizziness] |
Yes |
| Since Jan 1, 2020, to the best of your recollection which symptoms have you experienced. [Confusion or inability to arouse] |
No |
| Since Jan 1, 2020, to the best of your recollection which symptoms have you experienced. [Running nose] |
Yes |
| Since Jan 1, 2020, to the best of your recollection which symptoms have you experienced. [Sore throat] |
Yes |
| Since Jan 1, 2020, to the best of your recollection which symptoms have you experienced. [Nausea] |
No |
| Since Jan 1, 2020, to the best of your recollection which symptoms have you experienced. [Vomiting] |
No |
| Since Jan 1, 2020, to the best of your recollection which symptoms have you experienced. [Abdominal pain] |
No |
| Since Jan 1, 2020, to the best of your recollection which symptoms have you experienced. [Diarrhea] |
Yes |
| Since Jan 1, 2020, to the best of your recollection which symptoms have you experienced. [Pink eye (conjunctivitis)] |
No |
| Since Jan 1, 2020, to the best of your recollection which symptoms have you experienced. [Loss of sense of smell] |
No |
| Since Jan 1, 2020, to the best of your recollection which symptoms have you experienced. [Loss of sense of taste] |
No |
| Are you regularly taking any of the following medications? Please choose all those that apply. |
Ibuprofen (eg. Advil, Midol, Motrin, Motrin IB, Motrin Migraine Pain, Proprinal) |
| 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 |
