Log In
When you log in, modules will be featured on your homepage to ask about your experiences with PKD.
Link Records
You can also link your health records through your provider’s online portal by clicking on “My Care Network”.
Share Data
Our third-party partner, 1UpHealth, ensures data security.
Your Privacy is protected because your name will be separated from your clinical data and questionnaire answers before they are shared with researchers, your privacy is carefully protected.
Can you spare an hour or two?
We’ve got questions for you. The eight modules we’ve designed will help paint a full picture of your PKD experience. They take 60-90 minutes to complete, and you can leave and come back between modules.
Share ongoing clinical data by linking your health records.
Core questionnaire
10-15 minutes
This module asks about your personal medical history.
Please make sure you know your:
- Most recent kidney function lab values (creatinine and eGFR).
- Year of diagnosis.
- Name of your physician and medical center.
- Month and year you began medication for high blood pressure (if applicable).
Pain and discomfort scale
5-10 minutes
This module asks about your experience with pain over the past seven days.
Your answers help us understand your PKD pains.
Note: If you are a transplant patient and have had your PKD kidneys removed, this survey may not apply to you.
Vascular outcomes
5-15 minutes
This module asks about your experience with brain, chest, or abdominal aneurysms.
Make sure you know:
- How your aneurysm was diagnosed or screened for (if applicable).
- The size of your aneurysm and treatment methods (if applicable).
- Your family history of aneurysms.
Family history
~25 minutes
This module asks about your family history of ADPKD.
It should take about 25 minutes depending on your familiarity with your family’s experience with PKD.
Diet and lifestyle
5-10 minutes
This module asks about your diet and lifestyle.
We’ll ask about:
- Any dietary supplements you take (ex: fish oil, folic acid)
- Alcohol and caffeine consumption (coffee, tea, and soda)
- How much water you drink on an average day
- Your exercise habits
- Food you exclude from your diet (ex: meat, eggs, salt)
Healthcare access and utilization
10-15 minutes
This module asks about your experience accessing care for your PKD.
We’ll ask about:
- The clinicians who manage your disease
- The challenges you may have faced affording and accessing:
- Medications
- Procedures
- Dialysis and transplant services
- Other medical costs
ADPKD impact scale
5-10 minutes
This module asks you about your personal experience with PKD over the past two weeks.
Your answers will help us understand how physical, emotional, and fatigue impact your PKD.
Experience with liver cysts
5-10 minutes
This module asks about your medical history with liver cysts.
Make sure you know:
- How your liver cysts were discovered.
- Issues you believe to be due to liver cysts.
- Medication you’re taking for your liver cysts.