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Public Profile -- hu868880

Public profile url: https://my.pgp-hms.org/profile/hu868880

Real Name

Robin D Goldstein

Personal Health Records

Demographic Information

Date of Birth1957-09-23 (60 years old)
GenderFemale
Weight200lbs (91kg)
Height6ft (182cm)
Blood TypeA+
RaceWhite

Conditions

Name Start Date End Date
Arteriovenous Malformation
Benign Positional Vertigo
Gender Identity Disorder
Kidney Cancer
Kyphosis
Meningioma
Migraine without aura
Tinnitus

Medications

Name Dosage Frequency Start Date End Date
Estrofemin
Omnaris (nasal spray)

Allergies

Name Reaction/Severity Start Date End Date
Cat Hair Std Extract Severe
Dilantin Severe
Mold Extracts Mild
Sulfa (Sulfonamides) Severe

Procedures

Name Date
Appendectomy
Exploratory open surgery of the brain (craniotomy)
Gamma Knife Stereotactic Radiation
Nephrectomy

Test Results

Name Result Date
Height 72 inches 2009-08-05
Weight 3200 ounces 2009-08-05

Immunizations

Name Date

Updated: 2010-10-17T17:56:53.857Z

Samples

Saliva Collection Pilot Study for 100 participants Sample 87494482 (saliva) received 2011-10-26 21:33:41 UTC by Harvard University.   Show log
2012-04-12 21:02:25 UTC Harvard University / TeloMe, Inc. A new sample 55830090 was derived from this sample
2011-10-26 21:33:54 UTC Harvard University Sample transferred to plate 4504234 (id=3) well B06 (id=18)
2011-10-26 21:33:41 UTC Harvard University Sample received by researcher (scan)
2011-08-27 00:58:43 UTC hu868880 Sample returned to researcher
2011-08-22 19:32:14 UTC Harvard University Sample received by researcher (scan)
2011-08-15 22:15:17 UTC hu868880 Sample returned to researcher
2011-08-08 19:08:14 UTC hu868880 Sample received by participant
2011-08-02 15:09:29 UTC Harvard University / TeloMe, Inc. Sample sent
2011-08-02 04:03:14 UTC Harvard University / TeloMe, Inc. Sample created
Sample 13052892 (saliva) received 2011-09-13 19:19:41 UTC by Harvard University.   Show log
2012-04-12 21:02:05 UTC Harvard University / TeloMe, Inc. A new sample 87957083 was derived from this sample
2011-09-13 19:19:47 UTC Harvard University Sample transferred to plate 30097989 (id=2) well B06 (id=18)
2011-09-13 19:19:41 UTC Harvard University Sample received by researcher (scan)
2011-08-27 00:58:43 UTC hu868880 Sample returned to researcher
2011-08-22 19:36:24 UTC Harvard University Sample received by researcher (scan)
2011-08-15 22:15:17 UTC hu868880 Sample returned to researcher
2011-08-08 19:08:14 UTC hu868880 Sample received by participant
2011-08-02 15:09:30 UTC Harvard University / TeloMe, Inc. Sample sent
2011-08-02 04:03:14 UTC Harvard University / TeloMe, Inc. Sample created
Sample 30530868 (saliva) received 2011-09-09 20:19:43 UTC by Harvard University.   Show log
2012-04-12 21:01:43 UTC Harvard University / TeloMe, Inc. A new sample 32331357 was derived from this sample
2011-09-09 20:19:50 UTC Harvard University Sample transferred to plate 87023884 (id=1) well B06 (id=18)
2011-09-09 20:19:43 UTC Harvard University Sample received by researcher (scan)
2011-08-27 00:58:43 UTC hu868880 Sample returned to researcher
2011-08-22 19:34:00 UTC Harvard University Sample received by researcher (scan)
2011-08-15 22:15:17 UTC hu868880 Sample returned to researcher
2011-08-08 19:08:14 UTC hu868880 Sample received by participant
2011-08-02 15:09:30 UTC Harvard University / TeloMe, Inc. Sample sent
2011-08-02 04:03:14 UTC Harvard University / TeloMe, Inc. Sample created
Saliva Collection for Multiple Studies Sample 28374740 (saliva) received 2012-01-10 23:59:44 UTC by Harvard University / TeloMe, Inc..   Show log
2012-04-12 21:05:47 UTC Harvard University / TeloMe, Inc. A new sample 22461008 was derived from this sample
2012-01-10 23:59:48 UTC Harvard University / TeloMe, Inc. Sample transferred to plate 25942764 (id=13) well E08 (id=56)
2012-01-10 00:33:52 UTC hu868880 Sample returned to researcher
2011-12-19 23:32:55 UTC hu868880 Sample received by participant
2011-12-03 20:27:39 UTC Harvard University / TeloMe, Inc. Sample sent
2011-11-30 00:02:49 UTC Harvard University / TeloMe, Inc. Sample created
Sample 79934905 (saliva) received 2012-01-11 00:27:23 UTC by Harvard University / TeloMe, Inc..   Show log
2012-04-12 21:06:08 UTC Harvard University / TeloMe, Inc. A new sample 15232001 was derived from this sample
2012-01-11 00:27:28 UTC Harvard University / TeloMe, Inc. Sample transferred to plate 11192313 (id=14) well E08 (id=56)
2012-01-10 00:33:53 UTC hu868880 Sample returned to researcher
2011-12-19 23:32:55 UTC hu868880 Sample received by participant
2011-12-03 20:27:39 UTC Harvard University / TeloMe, Inc. Sample sent
2011-11-30 00:02:49 UTC Harvard University / TeloMe, Inc. Sample created
Saliva Re-collection for Multiple Studies Sample 48527622 (saliva) received 2012-05-07 23:10:20 UTC by Harvard University / TeloMe, Inc..   Show log
2012-05-07 23:10:20 UTC Harvard University / TeloMe, Inc. Sample received by researcher
2012-04-19 15:34:33 UTC hu868880 Sample returned to researcher
2012-04-11 13:48:20 UTC hu868880 Sample received by participant
2012-03-24 23:44:39 UTC Harvard University / TeloMe, Inc. Sample sent
2012-03-06 15:29:09 UTC Harvard University / TeloMe, Inc. Sample created
Sample 42965850 (saliva) received 2012-05-07 23:10:06 UTC by Harvard University / TeloMe, Inc..   Show log
2012-05-07 23:10:06 UTC Harvard University / TeloMe, Inc. Sample received by researcher
2012-04-19 15:34:33 UTC hu868880 Sample returned to researcher
2012-04-11 13:48:20 UTC hu868880 Sample received by participant
2012-03-24 23:44:39 UTC Harvard University / TeloMe, Inc. Sample sent
2012-03-06 15:29:09 UTC Harvard University / TeloMe, Inc. Sample created
Sample 58989632 (saliva) received 2012-05-07 23:10:28 UTC by Harvard University / TeloMe, Inc..   Show log
2012-05-07 23:10:28 UTC Harvard University / TeloMe, Inc. Sample received by researcher
2012-04-19 15:34:33 UTC hu868880 Sample returned to researcher
2012-04-11 13:48:20 UTC hu868880 Sample received by participant
2012-03-24 23:44:39 UTC Harvard University / TeloMe, Inc. Sample sent
2012-03-06 15:29:09 UTC Harvard University / TeloMe, Inc. Sample created

Uploaded data

Date Data type Source Name Download Report
2014-02-04 Complete Genomics PGP CGI sample GS02269-DNA_E01 from PGP sample Download
(244 MB)
View report
2011-01-24 23andMe Participant hu868880 - 23andMe - 01/24/11 Download
(7.87 MB)
View report
• male
• 960,667 positions covered
• ref. b36

Geographic Information

State:California
Zip code:95124

Family Members Enrolled

None added.

Surveys

PGP Participant Survey Responses submitted 7/16/2011 21:54:55. Show responses
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.
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
PGP Trait & Disease Survey 2012: Cancers Responses submitted 11/11/2012 20:03:28. Show responses
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)
PGP Trait & Disease Survey 2012: Endocrine, Metabolic, Nutritional, and Immunity Responses submitted 11/11/2012 20:05:03. Show responses
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
PGP Trait & Disease Survey 2012: Blood Responses submitted 11/11/2012 20:06:36. Show responses
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
PGP Trait & Disease Survey 2012: Nervous System Responses submitted 11/11/2012 20:07:40. Show responses
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
PGP Trait & Disease Survey 2012: Vision and hearing Responses submitted 11/11/2012 22:04:05. Show responses
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)
PGP Trait & Disease Survey 2012: Circulatory System Responses submitted 11/11/2012 22:05:33. Show responses
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
PGP Trait & Disease Survey 2012: Respiratory System Responses submitted 11/11/2012 22:05:55. Show responses
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
PGP Trait & Disease Survey 2012: Digestive System Responses submitted 11/11/2012 22:06:52. Show responses
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
PGP Trait & Disease Survey 2012: Genitourinary Systems Responses submitted 11/11/2012 22:07:22. Show responses
Timestamp 11/11/2012 22:07:22
Have you ever been diagnosed with any of the following conditions? Kidney stones
PGP Trait & Disease Survey 2012: Skin and Subcutaneous Tissue Responses submitted 11/11/2012 22:08:02. Show responses
Timestamp 11/11/2012 22:08:02
Have you ever been diagnosed with any of the following conditions? Dandruff, Acne
PGP Trait & Disease Survey 2012: Musculoskeletal System and Connective Tissue Responses submitted 11/11/2012 22:08:45. Show responses
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
PGP Trait & Disease Survey 2012: Congenital Traits and Anomalies Responses submitted 11/11/2012 22:09:13. Show responses
Timestamp 11/11/2012 22:09:13
PGP Basic Phenotypes Survey 2015 Responses submitted 6/20/2016 12:14:16. Show responses
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

Absolute Pitch Survey [see all responses]

Can tell if notes are in tune: Yes
Can sing a melody on key: Yes
Can recognize musical intervals: Yes
Do you have absolute pitch? Not sure

Enrollment History

Participant ID:hu868880
Account created:2009-06-01 04:53:16 UTC
Eligibility screening:2009-06-01 04:56:35 UTC (passed v1)
Exam:2009-06-01 15:28:59 UTC (passed v1)
Consent:2015-08-06 14:28:44 UTC (passed v20150505)
Enrolled:2010-10-10 16:16:04 UTC