Patient Characteristics

This form collects demographic and basic clinical information about patients.

This form hosts the following information:

• Patient’s country and state of residence. Country and state are identifiable information and are not included in the fully deidentified data set.

• Gender

• Ethnicity. Based on the selecting patient's country of origin, additional options for selecting ethnicities will become available in a separate box.

  
  

• Family history of renal disease. This should include any known (confirmed) family history of kidney disease affecting the patient and any kidney disease affecting family members suspected to be due to the same cause

  • Select none, one, or more options from the dropdown menu.

  • If the options provided do not capture the patient’s family history of renal disease, please select “Other (cousins, niece, nephew, etc.)” and specify further in the field that appears, “Other Family History.”

  • Only select members of the patient’s family that have had a diagnosis or are suspected of having had a diagnosis of the same or related renal disease as that of the patient.

    
    

**Do not include unrelated renal diseases in this field**

• Clinical Trial Participation. Enter any current or past clinical trial participation of the patient and include important information such as start date, end date (if applicable), adverse events, and adverse event outcomes.

Please note that two fields ask for a patient’s country:

• Country of residence is meant to capture the country where the patient lives and receives most of their medical care. The second field is related to the patient’s ethnicity.

• Country of origin is meant to capture the country of the patient’s ethnic origin or self-identifies as being native to.

For example:

• A person born in Mexico but who resides in the United States would select “United States of America (USA)” for “Country of residence” and “Mexico” for “Country of origin”.

• A Alternatively, a patient who resides in the United States but whose ancestors are from Mexico may choose “United States of America” as “Country of residence” AND “Country of origin” and further specify their ethnicity as “Hispanic” in the “Ethnicity” box following “Country of origin.”

  • Please note that once you select a value for “Country of origin” this new field (“Ethnicity”) will pop up. The options for this field are created based on Harvard Institute of Economic Research’s paper on Fractionalization, CIA’s The World Factbook, and the Wikipedia page on Global Ethnicities.

  • If you feel that the options provided do not capture the patient’s ethnicity, please use the field “Ethnicity (Other)” to specify further.