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PGP Participant Survey
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Responses submitted 4/4/2012 16:25:35.
Show responses
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| Timestamp |
4/4/2012 16:25:35 |
| Year of birth |
21-29 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. |
Von Willebrands Disease. (will answer based on that)
Also have: Severe scoliosis (greater than 50 degrees). Born with a VSD (hole in heart). Syringomyelia / syrinx. Asthma. Allergies. Possible Hashimotos (still waiting for test).
Strong family history for depression, addiction, and various cancers including--osteosarcoma, leukemia, breast cancer, lung cancer (nonsmoker), and a pancoast tumor. |
| Disease/trait: Onset |
10-19 years of age |
| Disease/trait: Rarity |
Fairly common |
| 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 |
I have PTT results and other bloodwork confirming platelet dysfunction from 2000 through the current year, including surgical records for a spinal fusion where it was tested in response to medication.
I also have copies of medical records for other disorders (MRI scans for syrinx and scoliosis, bloodwork, a tilt test for fainting due to heart problem). |
| Sex/Gender |
Female |
| 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 |
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 |
