The Roadmap to Integrate Diversity, Equity, and Inclusion in Hematology Clinical Trials: An American Society of Hematology Initiative.

Clinical trial design for classical hematologic diseases is difficult because samples sizes are often small and not representative of the disease population. ASH initiated a Roadmap project to identify barriers and make progress to integrate diversity, equity, and inclusion into trial design and conduct. Focus groups of international experts from across the clinical trial ecosystem were conducted.

"You Can't Let Go" - A Black Community Leader's Perspective on Engagement and Advocacy.

Lanre Tunji-Ajayi is president and CEO of the Sickle Cell Awareness Group of Ontario (SCAGO). This charitable organization focuses on ameliorating the lives of those living with sickle cell disease by providing evidence-based support to patients and supporting clinical and psychosocial research, health promotion and the development of best practice guidelines. Lanre's passion for this work is personal.

Pain management in adult patients with sickle cell disease in the emergency department: how does current practice compare with existing standards of care?

Purpose: Sickle cell disease (SCD) is an inherited blood disorder with a natural course punctuated by acute complications including painful vaso-occlusive episodes. The objectives were: (1) to determine what proportion of patients with SCD receive opioids within 30 min of triage as recommended by the current clinical recommendations and quality standard; and (2) to identify facilitators to timely opioid administration for patients with SCD.

Methods: This was a retrospective observational study.

Sickle cell disease in Ontario, Canada: an epidemiologic profile based on health administrative data.

Background: The number of patients with sickle cell disease in Ontario, Canada, is unknown. In the absence of a formal registry, we performed a study to determine an approximate census via analysis of health administrative databases.

Methods: We identified Ontario patients with a diagnosis of sickle cell disease through queries of the Discharge Abstract Database, National Ambulatory Care Reporting System and Newborn Screening Ontario database.

Ensuring Equity and Inclusion in Virtual Care Best Practices for Diverse Populations of Youth with Chronic Pain.

Poor access to care is a top patient-oriented research priority for youth with chronic pain in Canada, and the COVID-19 pandemic has exacerbated these concerns. Our patient-oriented project team engaged with marginalized and racialized youth with chronic pain (Black youth with sickle cell disease, Indigenous youth and youth with complex medical needs) and their families to ensure that best practice recommendations for virtual care are inclusive and equitable. Input provided through virtual round-table discussions improved recommendations for leveraging, implementing and selecting best platforms for virtual care for youth with chronic pain and identified new gaps for future research, practice and policy change.