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Protocol - Recurrent Priapism

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Description

This protocol uses existing medical records to document whether the respondent has experienced one or more episodes of priapism and whether surgery was performed to correct blood flow. Responses to each question are Yes, No, or Unknown and cover the timeframe between diagnosis and the start of a preparative regimen.

Specific Instructions

To be answered for males only

Protocol

Priapism

1. Did one or more episodes of priapism occur? (to be answered for males only)

Report Yes if the recipient experienced one or more episodes of priapism (with or without treatment) at any time between diagnosis and the start of the preparative regimen. If the recipient did not experience priapism or no information is available to determine if the recipient experienced priapism, report No or Unknown, respectively.

1[ ]Yes

2[ ]No

3[ ]Unknown

2. Was surgery performed at any time to correct the blood flow?

If the recipient experienced an episode(s) of priapism, indicate if surgery was required at any time to correct the blood flow. Report Yes if surgery was performed at any between diagnosis and the start of the preparative regimen / infusion to correct blood flow. If surgery was not performed or if no information is available to determine if surgery was performed to correct blood flow as a result of priapism, report No or Unknown, respectively.

1[ ]Yes

2[ ]No

3[ ]Unknown

Copyright© 2012 National Marrow Donor Program and the Medical College of Wisconsin, Inc.

Availability

Available

Personnel and Training Required

Personnel who are trained in performing medical records review

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

Medical record abstraction

Lifestage

Child, Adolescent, Adult, Senior

Participants

Postpubescent males

Selection Rationale

The Sickle Cell Disease Curative Therapies Working Group selected questions from the Center for International Blood and Marrow Transplant Research (CIBMTR) as the best standardized methodology for collecting data on priapism. CIBMTR forms were developed with the international transplant community to establish a standard set of data elements to be collected for all transplant recipients. Additionally, there are comprehensive Forms Instruction Manuals to guide investigators.

Language

English

Standards
StandardNameIDSource
caDSR Common Data Elements (CDE) Priapism Greater Than or Equal To 1 Incidence Occurrence Indicator 7332067 CDE Browser
caDSR Common Data Elements (CDE) Priapism Blood Flow Correction Surgical Procedure Performed Indicator 7334425 CDE Browser
Derived Variables

None

Process and Review

Not applicable.

Protocol Name from Source

Center for International Blood and Marrow Transplant (CIBMTR), Form 2030 (R3.0) Sickle Cell Pre-HSCT Data, 2021

Source

Center for International Blood and Marrow Transplant Research. (2021, February). Sickle Cell Disease Pre-HSCT Data (SCD) Form (CIBMTR Form 2030, Revision 3.0), Questions 77-78. National Heart, Lung, and Blood Institute.

General References

Idris, I. M., Abba, A., Galadanci, J. A., Mashi, S. A., Hussaini, N., Gumel, S. A., Burnett, A. L., & DeBaunet, M. R. (2020). Men with sickle cell disease experience greater sexual dysfunction when compared with men without sickle cell disease. Blood Advances, 4(14), 3277–3283.

Montague, D. K., Jarow, J., Broderick, G. A., Dmochowski, R. R., Heaton, J. P. W., Lue, T. F., Nehra, A., Sharlip, I. D., & Members of the Erectile Dysfunction Guideline Update Panel (2003). American Urological Association guideline on the management of priapism. Journal of Urology, 170, 1318–1324.

Protocol ID

850601

Variables
Export Variables
Variable Name Variable IDVariable DescriptiondbGaP Mapping
Blood Sciences Research
Measure Name

Priapism

Release Date

August 16, 2021

Definition

Priapism is a medical emergency that is defined as prolonged erection of the penis, usually without sexual arousal, lasting 4 hours or more.

Purpose

Priapism, while uncommon in the general population, is a common complication of sickle cell disease (SCD) that results in an additional disease burden in the form of negative self-image effect such as sadness, embarrassment, and fear. Information is needed to evaluate outcomes, improve guidelines, and continue progress in the management of priapism.

Keywords

Erectile, dysfunction, sickle cell disease, SCD, sexual, erection, ED, pain, priapism, reproductive health, male sexual function, Center for International Blood and Marrow Transplant Research, CIBMTR

Measure Protocols
Protocol ID Protocol Name
850601 Recurrent Priapism
Publications

There are no publications listed for this protocol.