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Protocol - History of Transfusion

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Description

This protocol includes three self-administered questions from the Duke-UNC-Emory Outcome Modifying Genes Study that capture number of units (pints) of blood ever received, whether the patient is currently receiving chronic transfusion therapy, and whether the patient is on iron chelation treatment.

Specific Instructions

Although these questions were originally administered to adults, the Sickle Cell Disease Research and Scientific Panel (SRSP) notes that they could be administered to other age groups, such as senior citizens, adolescents, or young children via proxy.

The SRSP notes that units, pints, or bags of blood may be used interchangeably in question 1, and that the investigator should use whichever term is more likely to be understood by the patient.

The SRSP notes that it may be helpful to give the participant a list of medications used for iron chelation, such as Deferoxamine (Desferal®), Deferasirox (Exjade™), or Deferiprone (Ferriprox®).

Desferal® is a registered trademark of Novartis Pharmaceuticals Corporation.

Exjade™ is a trademark of Novartis Pharmaceuticals Corporation.

Ferriprox® is a registered trademark of Apotex technologies Inc.

Protocol

1. Estimate the number of units (pints) of blood that you have ever received. (Select one).

[ ] none

[ ] 1 to 10

[ ] 11 to 20

[ ] 21 to 50

[ ] more than 50

[ ] Don’t Know

2. Are you on chronic transfusion therapy at this time?

[ ] Yes

[ ] No

[ ] Don’t Know

3. Are you on iron chelation treatment?

[ ] Yes

[ ] No

[ ] Don’t Know

Availability

Available

Personnel and Training Required

None

Equipment Needs

None

Requirements
Requirement CategoryRequired
Major equipment No
Specialized training No
Specialized requirements for biospecimen collection No
Average time of greater than 15 minutes in an unaffected individual No
Mode of Administration

Self-administered questionnaire

Life Stage

Adult

Participants

Adults, ages 18 and older

Selection Rationale

The brief, low-burden, self-administered questions from the Duke-UNC-Emory Outcome Modifying Genes Study were vetted against transfusion assessments from several clinical trials and were chosen as the best available method to capture the relevant data.

Language

English

Standards
StandardNameIDSource
caDSR Common Data Elements (CDE) Hematology Blood Transfusion History Questionnaire Assessment Text 4924426 CDE Browser
Derived Variables

None

Process and Review

Not applicable.

Protocol Name from Source

Telen, M.J., et al. Alloimmunization in sickle cell disease: changing antibody specificities and association with chronic pain and decreased survival. TRANSFUSION, 2015

Source

Telen, M.J., Afenyi-Annan, A., Garrett, M.E., Combs, M.R., Orringer, E.P., & Ashley-Koch, A.E. (2015). Alloimmunization in sickle cell disease: changing antibody specificities and association with chronic pain and decreased survival. Transfusion 55(6 Pt 2), 1378 - 1387.

General References

Detterich, J.A., Kato, R.M., Rabai, M., Meiselman, H.J., Coates, T.D., & Wood, J.C. (2015). Chronic transfusion therapy improves but does not normalize systemic and pulmonary vasculopathy in sickle cell disease. pii: blood-2014-12-614370. [Epub ahead of print]

Kassim, A.A., Galadanci, N.A., Pruthi, S., & DeBaun, M.R. (2015). How I treat and manage strokes in sickle cell disease. Blood 125(22), 3401-3410.

Kwiatkowski, J.L., Yim, E., Miller, S., Adams, R.J.; STOP 2 Study Investigators. (2011). Effect of transfusion therapy on transcranial Doppler ultrasonography velocities in children with sickle cell disease. Pediatric Blood and Cancer 56(5), 777-782.

Protocol ID

830201

Variables
Export Variables
Variable Name Variable IDVariable DescriptiondbGaP Mapping
PX830201_Transfusion_Chronic_Therapy
PX830201020000 Are you on chronic transfusion therapy at more
this time? show less
N/A
PX830201_Transfusion_Iron_Chelation
PX830201030000 Are you on iron chelation treatment? N/A
PX830201_Transfusion_Lifetime
PX830201010000 Estimate the number of units (pints) of more
blood that you have ever received. (Select one). show less
N/A
Blood Sciences Research
Measure Name

History of Transfusion

Release Date

July 30, 2015

Definition

A questionnaire to assess history of transfusion.

Purpose

Blood transfusions, which are used to treat various medical conditions such as hemophilia, cancer, and sickle cell disease, expose patients to risks of infectious agents (e.g., HIV and hepatitis), iron overload, alloimmunization and hyperviscosity. Transfusion therapy can also impact the results of bioassays, such as complete blood count, reticulocyte count, cell-free hemoglobin, haptoglobin, aspartate aminotransferase, and measurements such as transcranial Doppler ultrasonography (TCD).

Keywords

Sickle cell disease, SCD, transfusion, blood transfusion, chronic transfusion, iron chelation, transfusion history, hemophilia, hemochromatosis, HIV, AIDS, hepatitis, red cell exchange, erythrocytapheresis,