Sickle Cell Clinical Resource Hub
Welcome to the FWGBD Provider Resource Hub for Women and Girls with Sickle Cell Disease (SCD). This centralized hub features guidelines, expert recommendations, reproductive health considerations, care pathways and educational resources on SCD during each phase of a woman’s lifespan.
Browse each life stage to access a collection of trusted resources, educational materials and practical tools to support healthcare professionals in providing informed, compassionate care for women and girls with sickle cell disease.
Caring for Women and Girls with Sickle Cell Disease Across the Lifespan
Building the Foundation for Lifelong Health
Key Topics:
- Growth and development
- Nutrition
- Bone Health
- Exercise and physical activity
- Pubertal timing
- Chronic pain
- Neurocognitive health
- Mental health
- Sleep
- School support
- Vaccination and infection prevention
- Transition readiness
Clinical Considerations
- Delayed puberty
- Growth restriction
- Vitamin D deficiency
- Osteopenia/osteoporosis risk
- Functional limitations
- Early menstrual education
- Family counseling
Suggested Resources
- Screening recommendations
- Transition readiness tools
- Pain Management resources
- Bone health guidance
- Mental health resources
Key Topics
- Menarche counseling
- Dysmenorrhea
- Heavy menstrual bleeding
- Hormonal therapy options
- Contraception
- Sexual health
- Fertility considerations
- Transition to adult care
- Mental health/body image
- Exercise participation
Clinical Considerations
- Menstrual management: how SCD pain may overlap with dysmenorrhea when bleeding is abnormal, impact of anticoagulation, risk of hemorrhagic ovarian cysts, possible endometriosis, iron balance considerations
- Contraception section: Estrogen considerations thrombosis risk, progestin-only methods, IUD considerations, menstrual suppression strategies
- High-value clinical pearls: Menstrual pain may trigger vaso-occlusive episodes, Hormonal suppression may improve quality of life, Avoid fragmented care between hematology and gynecology
Suggested resources
- Menstrual management algorithms
- Contraceptive counseling tools
- Transition checklists
- Patient handouts
Key Topics
- Fertility preservation
- Sexual and reproductive health
- Chronic pain
- Cardiovascular risk
- Kidney disease
- Pulmonary hypertension
- Bone health
- Anticoagulation
- Endothelial dysfunction
- Cancer screening
- Mental health/burnout
- Sexual wellness/intimacy
Clinical Considerations
- Preconception counseling
- Genetic counseling: Inheritance counseling, Partner screening, Reproductive options
- Pregnancy Risk Counseling: Maternal risks, thrombosis, hypertensive disorders, stroke, VOC frequency, anemia, acute chest syndrome, maternal mortality
- Fetal risks: fetal growth restriction, preterm birth, stillborn, NICU admission
- Fertility and Ovarian Health: impact of hydroxyurea, ovarian reserve, fertility preservation
Suggested Resources:
- Preconception checklist
- Multidisciplinary care pathway
- Medication safety tables
- Anticoagulation guidance
High-Risk Pregnancy Requires Coordinated Care
Key Topics
- Hematologic Changes in Pregnancy
- Hemoglobin
- Platelet count
- Thrombosis risk
- Vaso-occlusive crises
- Endothelial dysfunction/preeclampsia risk
- Maternal risks
- Severe anemia
- Thrombosis
- Stroke
- ACS
- Hypertensive disorders
- Maternal ICU admission
Clinical Considerations
- Fetal/Neonatal risks
- Growth restriction
- pre-term birth
- Fetal loss
- Neonatal complications
- Delivery Planning: transfusion strategies, anesthesia planning, anticoagulation timing, neuraxial anesthesia considerations, hemorrhage planning, thromboprophylaxis, regional anesthesia
The Fourth Trimester in SCD
Key Topics
- Delayed postpartum hemorrhage
- VTE risk
- Hypertension
- Pain crises
- Breastfeeding
- Mood disorders
- Contraception
- Transition back to chronic care
Clinical Considerations
- Thrombosis
- Prophylaxis
- Anticoagulation resumption
- Postpartum contraception
- Blood pressure monitoring
- Mental health screening
Key Topics
- Abnormal uterine bleeding
- Fibroids
- Polyps
- Endometrial hyperplasia
- Hormone replacement therapy
- Cardiovascular disease
- VTE risk
- Osteoporosis
- Cognitive health
- Cancer-associated bleeding
- Medication-associated bleeding
Clinical Considerations
- Balancing bleeding and thrombosis risk
- HRT safety
- Peri-procedural prophylaxis
- Surgical planning
- Menopause symptom management
- Management of bleeding with fibroids, polyps, and endometrial hyperplasia
- Risks and benefits of hormone replacement therapy (HRT)
- Prophylaxis for either bleeding or clotting around procedures
Supporting Aging in a Growing Population
Key Topics
- Cardiovascular disease
- Kidney disease
- Frailty
- Neurocognitive decline
- Mobility
- Chronic pain
- Polypharmacy
- Cancer
- Social isolation
- Caregiver burden
Clinical Considerations
- VWF associated with CVD and VTE in women with bleeding disorders
- Risk of surgical complications
- Medication-related bleeding
- Cancer-related bleeding
Additional Suggested Resources