Laboratory Data

This form captures data about laboratory tests that the patient had. All lab tests over the course of the patient’s care, including historical, baseline, recent, and current data, should be included.

Which laboratory data to collect is protocol specific. For example, a study protocol on C3GN may require capturing all complement test results in normal or abnormal ranges. However, a protocol to study Minimal Change Disease may not require capturing complement test results. In contrast, another study may require only capturing abnormal test results (e.g., abnormal paraproteins in SPEP).

Please note the form has seven (7) tabs:

• Serum Chemistries

• Urine Studies

• Complement

• Inflammatory Markers

• Infections

• Serologies

• Other Laboratory Data

Unless otherwise specified by a study protocol, we suggest collecting the following laboratory tests according to the following intervals:

• A minimum of twice a year for serum creatinine and UPCR collection biannually (first value in the interval of January to end of June, and first value in the interval July to end of December) or more frequently if changes indicate disease onset, relapse, or remission.

● Negative test results, such as hepatitis serologies, HIV, SPEP, etc., DO NOT need to be entered in the laboratory form unless specifically required by the protocol.

● SPEP and Immunofixation: only list the abnormal paraprotein(s) if identified. If paraproteins were quantified, add accordingly. The paraprotein is often neither identified nor quantified (e.g., homogenous band in gamma region, not further specified). In this case, add statement as is (e.g., test: “SPEP” results: “Homogenous band in gamma region” unit: “N/A”)

Please specify the laboratory test name, resulting value, units, and any comments related to the test. Ensure that your data entry is accurate and comprehensive.

Frequent errors to avoid include:

• Not specifying the test:

  • “Albumin” instead or “Serum albumin” or “Urine albumin”

• Error in decimal point:

  • “15” instead of “1.5”

• Error in the unit:

  • “g” instead of “mg”

Please note that the data you collect in this section is study-dependent, and there is no standard guideline for what laboratory tests to collect. Please refer to your principal investigator and study protocol for guidance on which laboratory test data to collect.

• If the date of the laboratory test is unavailable, use July 1 with the approximate year of diagnosis. If an exact year is not available, an approximation is acceptable. If any approximations are used, please make a note in the comments section.

• Once the date is entered, please click on the calculator to calculate the age at the time of the INDEX diagnosis date.