|
PGP Participant Survey
|
Responses submitted 3/4/2012 15:06:10.
Show responses
|
| Timestamp |
3/4/2012 15:06:10 |
| Year of birth |
70-79 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. |
atypical porphyria (affects all systems - used for the rest of questions)
mitochondria deletions/ROS/frail inner membranes
aortic aneurysms
double null - GST
poor metabolizer - CYP2C19
NAT2 - catalytically inefficient
cancer - prostrate/uterine |
| Disease/trait: Onset |
10-19 years of age |
| Disease/trait: Rarity |
Uncommon |
| Disease/trait: Severity |
Very severe disease |
| Disease/trait: Relative enrollment |
Maybe |
| Disease/trait: Diagnosis |
Yes |
| Disease/trait: Genetic confirmation |
Yes |
| Disease/trait: Documentation |
Yes |
| Disease/trait: Documentation description |
mitochondria mDNA analysis, EEGs, N-acetyl transferase, double null GST, |
| Sex/Gender |
Female |
| Race/ethnicity |
White |
| Maternal grandmother: Country of origin |
United States |
| Paternal grandmother: Country of origin |
Canada |
| Paternal grandfather: Country of origin |
Canada |
| Maternal grandfather: Country of origin |
United States |
| Enrollment of relatives |
No |
| Enrollment of older individuals |
Yes |
| 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? |
No, but I plan to |
| Blood sample |
Yes |
| Saliva sample |
Yes |
| Microbiome samples |
Yes |
| Tissue samples from surgery |
No |
| Tissue samples from autopsy |
Yes |
|
PGP Participant Survey
|
Responses submitted 9/26/2012 16:28:03.
Show responses
|
| Timestamp |
9/26/2012 16:28:03 |
| Year of birth |
70-79 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. |
Poor detoxification - have NULL GST-T, GST-M, mutant CYP450-2D6 (ext metabolizer), CYP450-2C19 (poor metabolizer),
CYP450-2C9 (ext metabolizer), NAT2 catalytically inefficient
Have symptoms of "portal systemic encephalopathy" including 4-6 Hz EEG "spike & wave"
familial Aortic Aneurysms |
| Disease/trait: Onset |
Before 10 years of age |
| Disease/trait: Rarity |
Fairly common |
| Disease/trait: Severity |
Very severe disease |
| Disease/trait: Relative enrollment |
Maybe |
| Disease/trait: Diagnosis |
Yes |
| Disease/trait: Genetic confirmation |
Yes |
| Disease/trait: Documentation |
Yes |
| Disease/trait: Documentation description |
The genetic data on CYP450s, Nat2, GSTs - can't figure how to upload the
picture of the EEG "spike and waves" - we're trying hard to get my exome done. |
| Sex/Gender |
Female |
| Race/ethnicity |
White |
| Maternal grandmother: Country of origin |
Netherlands |
| Paternal grandmother: Country of origin |
United Kingdom |
| Paternal grandfather: Country of origin |
France |
| Maternal grandfather: Country of origin |
Ireland |
| 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? |
No, but I plan to |
| 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
|
Responses submitted 10/19/2012 13:16:06.
Show responses
|
| Timestamp |
10/19/2012 13:16:06 |
| Have you ever been diagnosed with one of the following conditions? |
Colon polyps, Uterine fibroids |
| Other condition not listed here? |
pre-cancer uterus cells |
|
PGP Trait & Disease Survey 2012: Cancers
|
Responses submitted 10/20/2012 13:12:29.
Show responses
|
| Timestamp |
10/20/2012 13:12:29 |
| Have you ever been diagnosed with one of the following conditions? |
Colon polyps, Cervical cancer, Uterine fibroids |
|
PGP Trait & Disease Survey 2012: Endocrine, Metabolic, Nutritional, and Immunity
|
Responses submitted 10/20/2012 13:15:02.
Show responses
|
| Timestamp |
10/20/2012 13:15:02 |
| Have you ever been diagnosed with any of the following conditions? |
Hypothyroidism, Gout, Porphyria |
| Other condition not listed here? |
a-typical porphyria |
|
PGP Trait & Disease Survey 2012: Blood
|
Responses submitted 10/20/2012 13:20:19.
Show responses
|
| Timestamp |
10/20/2012 13:20:19 |
| Have you ever been diagnosed with any of the following conditions? |
Iron deficiency anemia |
| Other condition not listed here? |
borderline anemia |
|
PGP Trait & Disease Survey 2012: Nervous System
|
Responses submitted 10/20/2012 13:25:58.
Show responses
|
| Timestamp |
10/20/2012 13:25:58 |
| Have you ever been diagnosed with one of the following conditions? |
Essential tremor, Epilepsy, Migraine without aura, Carpal tunnel syndrome, Other peripheral neuropathy |
| Other condition not listed here? |
4-6Hz spike & wave EEG |
|
PGP Trait & Disease Survey 2012: Vision and hearing
|
Responses submitted 10/20/2012 13:28:13.
Show responses
|
| Timestamp |
10/20/2012 13:28:13 |
| Have you ever been diagnosed with one of the following conditions? |
Age-related cataract, Myopia (Nearsightedness), Astigmatism, Age-related hearing loss, Tinnitus |
|
PGP Trait & Disease Survey 2012: Circulatory System
|
Responses submitted 10/20/2012 13:30:32.
Show responses
|
| Timestamp |
10/20/2012 13:30:32 |
| Have you ever been diagnosed with one of the following conditions? |
Pulmonary embolism, Atrial fibrillation, Cardiac arrhythmia, Aortic aneurysm, Deep vein thrombosis (DVT), Varicose veins, Hemorrhoids |
|
PGP Trait & Disease Survey 2012: Digestive System
|
Responses submitted 10/20/2012 13:32:43.
Show responses
|
| Timestamp |
10/20/2012 13:32:43 |
| Have you ever been diagnosed with any of the following conditions? |
Dental cavities, Gastroesophageal reflux disease (GERD), Appendicitis, Hiatal hernia, Diverticulosis, Gallstones |
| Other condition not listed here? |
fibrous liver/gall bladder |
|
PGP Trait & Disease Survey 2012: Genitourinary Systems
|
Responses submitted 10/20/2012 13:34:30.
Show responses
|
| Timestamp |
10/20/2012 13:34:30 |
| Have you ever been diagnosed with any of the following conditions? |
Kidney stones, Urinary tract infection (UTI), Fibrocystic breast disease |
| Other condition not listed here? |
hysterectomy of uterus |
|
PGP Trait & Disease Survey 2012: Skin and Subcutaneous Tissue
|
Responses submitted 10/20/2012 13:36:55.
Show responses
|
| Timestamp |
10/20/2012 13:36:55 |
| Have you ever been diagnosed with any of the following conditions? |
Skin tags, Hair loss (includes female and male pattern baldness), Cafe au lait spots |
|
PGP Trait & Disease Survey 2012: Musculoskeletal System and Connective Tissue
|
Responses submitted 10/20/2012 13:39:36.
Show responses
|
| Timestamp |
10/20/2012 13:39:36 |
| Have you ever been diagnosed with any of the following conditions? |
Lupus, Rheumatoid arthritis, Osteoarthritis, Spinal stenosis, Sciatica, Bone spurs, Osteoporosis, Scoliosis |
|
PGP Trait & Disease Survey 2012: Congenital Traits and Anomalies
|
Responses submitted 10/20/2012 13:42:46.
Show responses
|
| Timestamp |
10/20/2012 13:42:46 |
|
PGP Trait & Disease Survey 2012: Cancers
|
Responses submitted 1/9/2013 10:09:39.
Show responses
|
| Timestamp |
1/9/2013 10:09:39 |
| Have you ever been diagnosed with one of the following conditions? |
Cervical cancer, Uterine fibroids |
|
PGP Participant Survey
|
Responses submitted 1/9/2013 10:22:06.
Show responses
|
| Timestamp |
1/9/2013 10:22:06 |
| Year of birth |
70-79 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 |
| Disease/trait: Onset |
10-19 years of age |
| Disease/trait: Rarity |
Fairly common |
| Disease/trait: Severity |
Very severe disease |
| Disease/trait: Relative enrollment |
Maybe |
| Disease/trait: Diagnosis |
Yes |
| Disease/trait: Genetic confirmation |
Yes |
| Disease/trait: Documentation |
Yes |
| Disease/trait: Documentation description |
Null GST genes, EEGs, NAT gene,
CYP450 genes, aneurysm CAT |
| Sex/Gender |
Female |
| Race/ethnicity |
White |
| Maternal grandmother: Country of origin |
Netherlands |
| Paternal grandmother: Country of origin |
United Kingdom |
| Paternal grandfather: Country of origin |
Other / don't know / no response |
| Maternal grandfather: Country of origin |
Ireland |
| Enrollment of relatives |
Yes |
| Enrollment of older individuals |
Yes |
| Enrollment of parents |
No |
| Enrolled relatives [Not genetically related (e.g. husband/wife)] |
1 |
| Are all your enrolled relatives linked to your PGP profile? |
Yes |
| 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 |
No |
| Tissue samples from autopsy |
Yes |
|
PGP Trait & Disease Survey 2012: Endocrine, Metabolic, Nutritional, and Immunity
|
Responses submitted 1/9/2013 10:26:20.
Show responses
|
| Timestamp |
1/9/2013 10:26:20 |
| Have you ever been diagnosed with any of the following conditions? |
Hypothyroidism, Gout, Porphyria |
| Other condition not listed here? |
poor detoxification |
|
PGP Trait & Disease Survey 2012: Blood
|
Responses submitted 1/9/2013 10:29:16.
Show responses
|
| Timestamp |
1/9/2013 10:29:16 |
| Have you ever been diagnosed with any of the following conditions? |
Iron deficiency anemia |
| Other condition not listed here? |
slightlyanemic, a-typical porphyria |
|
PGP Trait & Disease Survey 2012: Nervous System
|
Responses submitted 1/9/2013 10:35:20.
Show responses
|
| Timestamp |
1/9/2013 10:35:20 |
| Have you ever been diagnosed with one of the following conditions? |
Essential tremor, Cluster headaches, Epilepsy, Carpal tunnel syndrome, Other peripheral neuropathy |
| Other condition not listed here? |
mitochondrial myopathy |
|
PGP Trait & Disease Survey 2012: Vision and hearing
|
Responses submitted 1/9/2013 10:38:58.
Show responses
|
| Timestamp |
1/9/2013 10:38:58 |
| Have you ever been diagnosed with one of the following conditions? |
Age-related cataract, Hyperopia (Farsightedness), Floaters, Age-related hearing loss |
|
PGP Trait & Disease Survey 2012: Circulatory System
|
Responses submitted 1/9/2013 10:43:16.
Show responses
|
| Timestamp |
1/9/2013 10:43:16 |
| Have you ever been diagnosed with one of the following conditions? |
Atrial fibrillation, Cardiac arrhythmia, Aortic aneurysm, Varicose veins |
|
PGP Trait & Disease Survey 2012: Respiratory System
|
Responses submitted 1/9/2013 10:44:01.
Show responses
|
| Timestamp |
1/9/2013 10:44:01 |
| Have you ever been diagnosed with any of the following conditions? |
Chronic sinusitis |
|
PGP Trait & Disease Survey 2012: Digestive System
|
Responses submitted 1/9/2013 10:46:01.
Show responses
|
| Timestamp |
1/9/2013 10:46:01 |
| Have you ever been diagnosed with any of the following conditions? |
Dental cavities, Appendicitis, Hiatal hernia, Ulcerative colitis, Irritable bowel syndrome (IBS), Gallstones |
| Other condition not listed here? |
extremely fibrous liver/gall bladder |
|
PGP Trait & Disease Survey 2012: Genitourinary Systems
|
Responses submitted 1/9/2013 10:52:37.
Show responses
|
| Timestamp |
1/9/2013 10:52:37 |
| Have you ever been diagnosed with any of the following conditions? |
Kidney stones, Urinary tract infection (UTI) |
| Other condition not listed here? |
hysterectomy due to pre-cancer cells |
|
PGP Trait & Disease Survey 2012: Skin and Subcutaneous Tissue
|
Responses submitted 1/9/2013 10:56:29.
Show responses
|
| Timestamp |
1/9/2013 10:56:29 |
| Have you ever been diagnosed with any of the following conditions? |
Cafe au lait spots |
| Other condition not listed here? |
geneeral alopecia |
|
PGP Trait & Disease Survey 2012: Musculoskeletal System and Connective Tissue
|
Responses submitted 1/9/2013 10:57:53.
Show responses
|
| Timestamp |
1/9/2013 10:57:53 |
| Have you ever been diagnosed with any of the following conditions? |
Osteoarthritis, Spinal stenosis, Bone spurs, Osteoporosis, Scoliosis |
