Public Profile -- hu868880
Public profile url: https://my-dev.pgp-hms.org/profile/hu868880
Personal Health Records
Demographic Information
| Date of Birth | 1957-09-23 (68 years old) |
|---|---|
| Gender | Female |
| Weight | 200lbs (91kg) |
| Height | 6ft (182cm) |
| Blood Type | A+ |
| Race | White |
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.
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Sample
13052892
(saliva)
received
2011-09-13 19:19:41 UTC
by Harvard University.
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Sample
30530868
(saliva)
received
2011-09-09 20:19:43 UTC
by Harvard University.
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| Saliva Collection for Multiple Studies |
Sample
28374740
(saliva)
received
2012-01-10 23:59:44 UTC
by Harvard University / TeloMe, Inc..
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Sample
79934905
(saliva)
received
2012-01-11 00:27:23 UTC
by Harvard University / TeloMe, Inc..
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| Saliva Re-collection for Multiple Studies |
Sample
48527622
(saliva)
received
2012-05-07 23:10:20 UTC
by Harvard University / TeloMe, Inc..
Show log
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Sample
42965850
(saliva)
received
2012-05-07 23:10:06 UTC
by Harvard University / TeloMe, Inc..
Show log
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Sample
58989632
(saliva)
received
2012-05-07 23:10:28 UTC
by Harvard University / TeloMe, Inc..
Show log
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Uploaded data
| Date | Data type | Source | Name | Download | Report | |
|---|---|---|---|---|---|---|
| 2011-01-24 | 23andMe | Participant | hu868880 - 23andMe - 01/24/11 |
Download
(7.87 MB) |
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 |
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 14:05:40 UTC (passed v20150505) |
| Enrolled: | 2010-10-10 16:16:04 UTC |