Genitourinary

Release Date:

August 15, 2023

Scope of Collection

Element Considered	Final Measures in Toolkit
Puberty
Menstruation	Sickle Cell Disease Pain Associated with Menstruation
	Sickle Cell Disease Pain Associated with Menstruation - Quality of Life
Contraception	Female Contraception Use
Priapism	Priapism
Fertility	Fertility and Quality of Life
	Fertility History
Infertility
Testosterone Deficiency	Testosterone Level
Sexual Function	Sexual Function
Sexual, Romantic, and Partner Satisfaction
Exogenous hormone use	Hormone Therapy
Menopause	Perimenopausal Symptoms
Voiding Dysfunction	Overactive Bladder

Working Group Roster:

WG Members:

Lillian Meacham, MD, Co-Chair Emory University School of Medicine Atlanta, GA	Lydia Pecker, MD, Co-Chair Johns Hopkins University School of Medicine Baltimore, MD
Leslie Appiah, MD University of Colorado, Anschutz Aurora, CO	Andrea Roe, MD, MPH University of Pennsylvania School of Medicine Philadelphia, PA
Arthur (Bud) Burnett, MD Johns Hopkins University School of Medicine Baltimore, MD	Zora R. Rogers, MD University of Texas, Southwestern Dallas, TX
Adrienne Mishkin, MD, MPH, MBE, FAPA Columbia University Medical Center New York, NY

Sickle Cell Disease Panel Liaison, WG Manager and WG Supervisor:

Lauren Wood, MS, WG Manager RTI International Research Triangle Park, NC	Michelle E. Engle, PhD, WG Supervisor RTI International Research Triangle Park, NC

Supplemental Information includes protocols that the Working Group or Expert Review Panel considered useful and highly relevant to the domain but do not meet the criteria for inclusion in the Toolkit.

• Infertility Assessment

Additional Information:

There is no additional information for this collection.

Measure		Protocols	Domain/Collection
Female Contraception Use	Add to My Toolkit	Female Contraception Use and Preference in Sickle Cell Disease	Sickle Cell Disease Research Working Group 6: Genitourinary Specialty Collection
Fertility and Quality of Life	Add to My Toolkit	Fertility and Quality of Life	Sickle Cell Disease Research Working Group 6: Genitourinary Specialty Collection
Hormone Therapy	Add to My Toolkit	Hormone Therapy	Sickle Cell Disease Research Working Group 6: Genitourinary Specialty Collection
Fertility History	Add to My Toolkit	Offspring and Fertility History	Sickle Cell Disease Research Working Group 6: Genitourinary Specialty Collection
Overactive Bladder	Add to My Toolkit	Overactive Bladder Symptoms and Quality of Life	Sickle Cell Disease Research Working Group 6: Genitourinary Specialty Collection
Perimenopausal Symptoms	Add to My Toolkit	Perimenopausal Symptoms	Sickle Cell Disease Research Working Group 6: Genitourinary Specialty Collection
Priapism	Add to My Toolkit	Priapism Impact	Sickle Cell Disease: Curative Therapies Specialty Collection
Sexual Function	Add to My Toolkit	Sexual Function and Satisfaction - Female	Sickle Cell Disease Research Working Group 6: Genitourinary Specialty Collection
	Add to My Toolkit	Sexual Function and Satisfaction - Male	Sickle Cell Disease Research Working Group 6: Genitourinary Specialty Collection
Sickle Cell Disease Pain Associated with Menstruation	Add to My Toolkit	Sickle Cell Disease Pain Associated with Menstruation	Sickle Cell Disease Research Working Group 6: Genitourinary Specialty Collection
Sickle Cell Disease Pain Associated with Menstruation - Quality of Life	Add to My Toolkit	Sickle Cell Disease Pain Associated with Menstruation - Quality of Life	Sickle Cell Disease Research Working Group 6: Genitourinary Specialty Collection
Testosterone Level	Add to My Toolkit	Testosterone Level - Bioassay	Sickle Cell Disease Research Working Group 6: Genitourinary Specialty Collection