SCD Pregnancy

Release Date:

June 28, 2024

Scope of Collection

Element Considered	Final Measures in Toolkit
Pre-Implantation Genetic Diagnosis
Non-Invasive Prenatal Testing	Cell-free Fetal DNA Testing for Sickle Cell Disease (Supplemental Information)
Chorionic Villus Sampling (CVS)	Invasive Prenatal Testing Guidelines (Supplemental Information)
Amniocentesis	Invasive Prenatal Testing Guidelines (Supplemental Information)
Acute Chest Syndrome	Acute Chest Syndrome During Pregnancy
	Acute Chest Syndrome - General Populations (Supplemental Information)
Transfusion	Prophylactic Transfusion during Pregnancy
	Transfusion Indications
	Transfusion Reactions
Hydroxyurea	Hydroxyurea Use during Pregnancy
	Hydroxyurea Use Adherence - Prospective Studies
Thromboprophylaxis	Thromboprophylaxis
	Thrombosis - Catheter-related
	Thrombosis - Venous
Multidisciplinary Care for SCD	Multidisciplinary Care for Sickle Cell Disease Pregnancies (Supplemental Information)

Working Group Roster:

WG Members:

A. Kinga Malinowski, MD, MSc, FRCSC, Co-Chair University of Toronto Toronto, ON	Deva Sharma, MD, MS, Co-Chair Vanderbilt University Medical Center Nashville, TN
Monika Asnani, DM, PhD The University of the West Indies Kingston, JM	Kevin Kuo, MD, MSc, FRCPC University of Toronto Toronto, ON
Eugene Oteng-Ntim, DTropM, PhD, FRCOG King's College London London, UK	Kim Smith-Whitley, MD Global Blood Therapeutics Children's Hospital of Philadelphia South San Francisco, CA

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

Marian Sullivan, MS, MPH, WG Supervisor RTI International Research Triangle Park, NC	Thien Lam, MA, WG Manager 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.

• Hydroxyurea Use During Pregnancy

• Sickle Cell Disease Phenotype Consensus Definitions

• Multidisciplinary Care for Sickle Cell Disease Pregnancies

• Invasive Prenatal Diagnosis

• Cell-free Fetal DNA Testing for Sickle Cell Disease

• Acute Chest Syndrome

Additional Information:

There is no additional information for this collection.

Measure		Protocols	Domain/Collection
Acute Chest Syndrome - Pregnancy	Add to My Toolkit	Acute Chest Syndrome - Pregnancy	Sickle Cell Disease Research Working Group 7: Pregnancy Specialty Collection
Hydroxyurea Adherence - Prospective Studies	Add to My Toolkit	Hydroxyurea Adherence - Prospective Studies	Sickle Cell Disease Research Working Group 7: Pregnancy Specialty Collection
Prophylactic Transfusion During Pregnancy	Add to My Toolkit	Prophylactic Transfusion during Pregnancy	Sickle Cell Disease Research Working Group 7: Pregnancy Specialty Collection
Thromboprophylaxis	Add to My Toolkit	Thromboprophylaxis	Sickle Cell Disease Research Working Group 7: Pregnancy Specialty Collection
Thrombosis	Add to My Toolkit	Thrombosis - Catheter-related	Sickle Cell Disease Research Working Group 7: Pregnancy Specialty Collection
	Add to My Toolkit	Thrombosis - Venous - non-catheter-related	Sickle Cell Disease Research Working Group 7: Pregnancy Specialty Collection
Transfusion Indications	Add to My Toolkit	Transfusion Indications	Sickle Cell Disease Research Working Group 7: Pregnancy Specialty Collection
Transfusion Reactions	Add to My Toolkit	Transfusion Reactions	Sickle Cell Disease Research Working Group 7: Pregnancy Specialty Collection