The Sickle Cell Disease Post-HCT Data Form is one of the Comprehensive Report Forms. This form captures Sickle Cell Disease (SCD) post-HCT data for the reporting period.
This form must be completed for all recipients whose primary disease, as reported on the Pre-TED Disease Classification (2402) Form, is “Sickle Cell Disease (SCD).” The Post-HCT Sickle Cell Disease (2130) Form must be completed in conjunction with each Post-HCT Follow-up (2100) Form. This form is designed to capture specific data occurring within the timeframe of each reporting period (i.e., between day 0 and day 100; between day 100 and the six-month date of contact for six-month follow-up; and between the date of contact for the six-month follow-up and the date of contact for the one-year follow-up, etc.).
Links to Sections of the Form
Q1 – 5: Physical Assessments
Q6 – 8: Transfusion Therapy
Q9 – 13: Pulmonary Assessments
Q14 – 30: Cardiovascular Assessments
Q31 – 37: Renal Assessments
Q38 – 42: Splenic Assessments
Q43: Acute Chest Syndrome
Q44 – 46: Pain
Q47 – 49: Avascular Necrosis
Q50 – 58: Central Nervous System
Q59 – 66: Other Symptoms
Q67 – 73: Disease Modifying Therapies
Q74 – 100: Other Laboratory Studies
Q101: Disease Status
Sections of the Forms Instruction Manual are frequently updated. The most recent updates to the manual can be found below. For additional information, select the manual section and review the updated text.
|5/5/2021||2130: SCD Post-Infusion||Add||The Bedside Schwartz equation was added to questions 36 -37 to calculate the GFR for pediatric recipients.|
|4/28/2021||2130: SCD Post-Infusion||Modify||Instructions on when to report not applicable for questions 74 – 75 were updated: If RBC transfusion(s) were given within four weeks prior of the hemoglobin electrophoresis, report Not applicable and go to question 89.|
|11/23/2020||2130: SCD Post-Infusion||Add||Instructions added to question 101 to explain how to report the current disease status when the Hb S ≤ 50% but clinical symptoms are present: If the Hb S is ≤ 50 % but clinical symptoms are present, leave the data field blank, override the FormsNet3 error with “unable to answer,” and explain the Hb S is below ≤ 50 %; however, clinical symptoms are present in the comment section.|
|7/24/2020||2130: SCD Post-Infusion||Add||Version 1 of the 2130: Sickle Cell Disease (SCD) Post-Infusion Data section of the Forms Instruction Manual released. Version 1 corresponds to revision 3 of the Form 2130.|
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