Protocol - Recurrent Priapism
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
In contrast to the Priapism Impact Profile (PIP), these questions on recurrent priapism from the Center for International Blood and Marrow Transplant Research (CIBMTR) are more appropriate when recording previously collected data (e.g., from medical records) before and after bone marrow transplant. The Priapism Impact Profile (PIP) can be used to capture the personal experience of priapism, including the impact on quality of life, and can be used to measure treatment efficacy.
Availability
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.
Personnel and Training Required
Personnel who are trained in performing medical records review
Equipment Needs
None
Requirements
| Requirement Category | Required |
|---|---|
| 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
| Standard | Name | ID | Source |
|---|
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 ID | Variable Description | dbGaP Mapping | |
|---|---|---|---|---|
| PX850601_Recurrent_Priapism_Blood_Flow_Surgery | ||||
| PX850601020000 | Was surgery performed to correct the blood flow? | N/A | ||
| PX850601_Recurrent_Priapism_Priapism_Episodes | ||||
| PX850601010000 | Did one or more episodes of priapism occur? more | N/A | ||
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.
Purpose
Priapism is a painful condition that can lead to penile ischemia and erectile dysfunction. 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 |
| 850602 | Priapism Impact |
Publications
There are no publications listed for this protocol.