Growth & development
Growth and sexual maturation of girls with SCD in the era of disease-modifying therapies Osteoporosis risks, preventive measures, and progression over time
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Menstruation, menopause, sex hormone therapies and gynaecologic concerns
Interventions for the prevention and treatment of SCD-pain that is temporally associated with menstruation Severe iron deficiency associated with heavy menstrual bleeding Determine menopause onset, associated symptoms and optimal management Safety of oestrogen-containing contraception and hormone therapies in menopausal and transgender individuals Safety of oestrogen-containing contraception and other hormone therapies for SCD-related complications, such as acute pain Unintended pregnancy and long-acting reversible contraception use Breast disease and gynaecologic pathologies occurrence Breast, uterine and ovarian cancer occurrence
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Fertility and reproductive life planning
Reproductive lifespan with attention to genotype, disease complications and treatments Risks of infertility and when to initiate infertility evaluations Indications for and outcomes of fertility preservation interventions with attention to issues of oocyte quantity (ovarian reserve) and quality Success/effectiveness of and risks of fertility preservation interventions Standards for the provision of high-quality reproductive health care including studies of care models, sexual and reproductive health education across the transition from paediatric to adult care, and preconception counselling Health care utilization studies and cost-effectiveness analyses to identify strategies to leverage existing resources for fertility preservation and artificial reproductive technologies
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Pregnancy and antepartum issues
Risks for maternal mortality, pregnancy-related hypertensive disorders, venous thromboembolism, premature labour and SCD-related pregnancy complications (pain and acute chest syndrome) Interventional studies and randomized clinical trials to modify risks to mother and foetus during pregnancy and postpartum (depression, thrombosis, pain, neonatal abstinence syndrome, haemolytic disease of the new-born) Preferences about breastfeeding; impact of disease-specific factors and therapies on the feasibility of lactation and safety of breastfeeding Establish normal blood pressure values in pregnancy to inform the diagnosis of pre-eclampsia and eclampsia Standardization of appropriate testing to determine a couple’s risk for having a child with SCD
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Sex-differences in SCD complications across the lifespan
Sex-specific differences in SCD pathophysiology, symptoms, complications, and clinical outcomes, including response to disease-modifying therapies and success of curative therapies Comparison of access to disease-modifying and curative therapies for women versus men Incorporation of women’s health outcomes, including menses, bone health, pregnancy and lactation into clinical trials
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