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PGP Participant Survey
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Responses submitted 7/18/2011 1:06:53.
Show responses
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| Timestamp |
7/18/2011 1:06:53 |
| Year of birth |
40-49 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. |
My diagnosis is Chronic Daily Migraine (possibly New Daily Persistent Headache). My recollection is that I got a headache as a child that never went away. I have had some level of headache pain every second of every day since the age of 13. The pain escalated and has been extremely debilitating from age 33 to now, age 45. On the paternal side of my family, autoimmune diseases are common. My PGM , while in her 30's, developed severe rheumatoid arthritis, and all of her children seeminly have autoimmune issues. My father has allergies, asthma, and atrial fibrillation. My paternal aunt has Raynaud's Disease and allergies. My paternal uncle has MS. Another aunt has eczema and cancer. There is one paternal, female cousin who is older than I am, and she has either chronic fatigue or fibromyalgia. |
| Disease/trait: Onset |
10-19 years of age |
| Disease/trait: Rarity |
Very rare/uncommon |
| Disease/trait: Severity |
Very severe disease |
| Disease/trait: Relative enrollment |
Maybe |
| Disease/trait: Diagnosis |
Yes |
| Disease/trait: Genetic confirmation |
No |
| Disease/trait: Documentation |
Yes |
| Disease/trait: Documentation description |
I have my military childhood health records documenting the onset of the illness. I have been approved by Social Security for disability. I have MRIs and blood tests. I have been treated by several prominent neurologists. |
| 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 |
Yes |
| Have you uploaded genetic data to your PGP participant profile? |
No, I have no 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 |
