ImproveCareNow, a collaborative community to transform health care for children and young adults with Crohn’s disease and inflammatory bowel disease, offers a model.

SCD has not benefited in significant ways from medical advances compared with the general population or even other populations living with rare and heritable diseases, such as cystic fibrosis (CF) and hemophilia.

delineate the elements of a comprehensive system of sickle cell disease (SCD) care

HRSA should use the product of this activity to develop a process for certifying comprehensive SCD centers with linkages to community, nonurban, and stand-alone providers.

centers should develop strategies to enhance SCD care in geographically defined regions. Such strategies may include shared protocols for managing crises in community EDs, explicit guidelines for primary care providers, community health workers (CHWs) to assist individuals living with SCD, telemedicine access, and continuing education activities.

Specific indicators for chronic health care maintenance, acute/subacute care, and chronic care are needed.

Despite advances that have helped children living with SCD live longer, mortality and morbidity increase sharply in young adulthood (Treadwell et al., 2018)

Efforts should begin with a list of indicators known to be effective and consensus driven: (1) TCD screening, (2) prophylactic antibiotics for children with SCD between the ages of 3 months and 5 years old, (3) pain management, (4) vaccinations, (5) HU use, and (6) successful transitioning from pediatric to adult care.

There is insufficient research and information about the needs of the SCD population, which makes it difficult to appropriately inform programming and policies to address their needs.

here are evidence-based interventions (preventive, acute, and post-acute services) that every individual living with SCD should receive, although many do not.

Clinical practice guidelines developed for SCD management are not applied consistently; even where there is strong evidence for certain services, not everyone with SCD receives them.

One reason for these poor health outcomes is that the health care delivery system is not organized to address the health needs of individuals with SCD as they transition from pediatric to adult care.

Only a limited number of health care professionals is willing and able to provide the necessary SCD care, and the health care delivery system is poorly organized to facilitate the needs of this population.

As a result, people living with SCD often resort to episodic acute care to manage pain, the hallmark of the disease, as well as other acute complications.

a system of care that can provide comprehensive coordinated care management aimed at preventing SCD complications and reducing the disease burden.

Because of persistent racism and discrimination, the disease was not addressed for years after it was discovered in the United States. This racism persists, and individuals with SCD and SCT have had to contend with discrimination in the health care system.

Those living with SCD are also stigmatized in both health care and non–health care settings, in social circles, in places of employment, and schools.

The far-reaching health and health-related social implications of SCD and SCT for those who live with these conditions and their families necessitate expansive action that takes into account the inherent complexities of the disease.

the foundational principles on the six aims for the health care system identified in the IOM report Crossing the Quality Chasm: safe, effective, patient-centered, timely, efficient, and equitable (IOM, 2001).

The seven foundational principles for action for SCD in the United States are described below.

Safe: avoiding injuries to patients from the care that is intended to help them;

Effective: providing services based on scientific knowledge to all who could benefit and refraining from providing services to those not likely to benefit;

Patient-centered: providing care that is respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decisions;

Timely: reducing waits and sometimes harmful delays for both those who receive and those who give care;

Efficient: avoiding waste, including waste of equipment, supplies, ideas, and energy;

Equitable: providing care that does not vary in quality because of personal characteristics, such as gender, ethnicity, geographic location, and socioeconomic status; and

Ethical: providing care that is free of provider prejudice or bias, avoiding unfair treatment because of SCD diagnosis and trait status, and addressing patient mistrust in the health care system.

The Cystic Fibrosis Foundation (CFF) supports its registry with private donations, pharmaceutical company donations, and investments. This can serve as a model for the SCD community. Additionally, given that California and Georgia already have experience with linking health records for individuals living with SCD, they could serve as initial longitudinal registries which can then be expanded to all other states.

define and implement systems to validate and implement standards of health care and measures of desired clinical outcomes and patient-reported outcomes (PROs).

improve measures of access, use, and health-related disease burden