	Intervention Name		Strategies or Activities	Setting	Target Population	Outcomes	Program Status
	1. Policy: Universal newborn blood screening (NBS) program [20] (2006)		· Newborn sickle cell trait screening programs have been adopted by all US states since 2006. · All newborns undergo heel- prick blood collection and trained medical professionals fill out a newborn screening card which is sent to a state lab for analysis. · Follow-up education or counseling is not mandated but some hospitals provide this service, although there is unclear evidence of how many. Many sickle cell organizations have received grants from HRSA to provide follow up counseling to those who ask for it. (More details on HRSA grant here). · Prior to 1993, CDC Hemoglobinopathy Reference Laboratory provided national standardized testing protocols; distributed manuals and training courses (required for clinics to receive federal funding). · CDC maintains hemoglobinopathy proficiency testing program to ensure reliability of state testing. · Commercially available tests now widely used, and genetic testing may someday replace dried blood drop as standard.	The United States, 2006 through present day.	All newborns in the United States and their parents.	· Despite 1987 federal recommendation, there was high variability in state newborn screening program adoption prior to 2006. · Universal screening identifies almost all cases of a sickle cell trait, but follow-up conversations about sickle cell trait status/implications are not standard.	This intervention is active, but there have been cuts to funding.
	2. Mitigating sickle cell trait Associated Risks for War fighters and Athletes [45] (2012)		· Uniformed Services University convened an expert panel to: 1) Provide physical training that further mitigates the risk of fatal and nonfatal sickle cell collapse from intense exercise with a sickle cell trait and 2) Create clinical guidelines for frontline responders to recognize and treat sickle cell collapse, enabling warfighters and athletes to return to duty/their sport.	The summit was held on September 26 and 27, 2011 in Bethesda, Maryland.	Members of the military and athletes in the United States who have a sickle cell trait.	· This initiative was effective in introducing new terminology, exploring areas of controversy surrounding having a sickle cell trait, exploring methods for mitigating risk and adverse outcomes for members of the military and athletes, and identifying gaps in the research on sickle cell trait.	The clinical guidelines have evolved but are still in place.
	3. Screening for Sickle-Cell Trait at Accession to the United States Military [46] (2014)		· All military recruits were screened for sickle cell trait over a 10 year period. · This review explores the benefits and harms associated with sickle cell trait screening on military accession. · An analytical framework was developed to address five key questions (KQs) and address benefits and harms of sickle cell trait screening: KQ1: Does Sickle Cell Trait Screening of Healthy Adults Directly Decrease Morbidity and Mortality? KQ2: Does Sickle Cell Trait Screening of Healthy Adults Lead to Improved Knowledge of the Condition? KQ3: Does Improved Knowledge of the Sickle Cell Trait Condition Lead to Behavior Change? KQ4: Does Behavior Change Lead to Decreased Morbidity and Mortality? KQ5: What Are the Harms Associated With Sickle Cell Trait Screening of Healthy Adults?	United States military over 10 years.	General US military recruits.	· KQ1: Despite the increased risk of rhabdomyolysis and sudden exertional death among military recruits with a sickle cell trait, there is no evidence in the medical literature that screening directly reduces morbidity and mortality. · The only large-scale intervention study (N = 2.8 million) that showed a reduction in exercise-related mortality among military recruits with a sickle cell trait also showed a reduction among recruits without a sickle cell trait. · Over the course of the 10-year study period, the investigators estimated that nearly 15 deaths were averted among recruits with a sickle cell trait and nearly eight deaths were averted among recruits without a sickle cell trait. · KQ2: There are no published data regarding whether sickle cell trait screening of healthy adults leads to improved knowledge of the condition. · KQ3: Although it is presumed that knowledge of sickle cell trait positivity would cause individuals to be more cautious during training, there is no evidence to substantiate this hypothesis. · KQ4: There is strong evidence to confirm that behavior change leads to decreased morbidity and mortality in both recruits with and without a sickle cell trait. · KQ5: Potential harms of sickle cell trait screening include fiscal costs, opportunity costs, genetic labeling and discrimination, and a false sense of security among individuals without a sickle cell trait, including approximately 1% of trainees who will falsely screen negative. · The current evidence is insufficient to support a conclusive recommendation for or against universal sickle cell trait screening on military accession.	All military recruits are screened for a sickle cell trait before joining the military.
4. Policy: Public Law 92-294 (1972) Title XI-Sickle Cell Anemia Program [50] (1972)		· Nixon administration Sickle Cell Anemia Control Act (1972) provided funding for sickle cell trait/SCD screening and follow up counseling programs through the Department of Health, Education, and Welfare under the National Heart, Lung and Blood Institute (NHLBI). · The act gave the health secretary the power to grant research/training funding, development of public education programs on inheritance of a sickle cell trait and sickle cell anemia. · National Genetic Disease Act (1978) provided additional federal funding for years 1976-1978. · Nixon inaccurately stated SCD “strikes only blacks and no one else”.		People with a sickle cell trait and SCD across the United States.	Voluntary participation available to “any person requesting screening, counseling, or treatment.”	· Significant and highly visible financial investment in sickle cell disease; acknowledgement of lack of prior funding. · Funded 41 sickle cell centers/clinics, 250 + general screening programs, 69 research grants/contracts to support screening, education, and counseling. · Made note of counseling/education for people with a sickle cell trait and SCD. · Voluntary nature of program hindered universal adoption for decades. · Lack of information about having a sickle cell trait led to confusion, stigmatization, and distrust.		This intervention ended in 1978 and is no longer active.
5. Screening Student Athletes for Sickle Cell Trait—A Social and Clinical Experiment [47] (2010)		· The National Collegiate Athletic Association (NCAA) implemented mandatory testing for sickle cell trait status among all student athletes participating in Division One sports in 2010. Prior to the beginning of the athletic season, all students must submit documentation, but the study does not explain how institutions reinforce the mandate. · Sickle Cell Solubility Tests (SST) are provided by the NCAA Committee on Competitive Safeguards and Medical Aspects of Sports, and results are shared directly with students and coaches.		Colleges and Universities in the United States from 2010-2011.	All Division One College Athletes.	· This initiative was effective in screening around 167,000 student athletes between 2010 and 2011 alone. However, this screening intervention was not paired with any treatment or resources. · Students can avoid the testing if they provide a signed waiver releasing their university and the NCAA from liability. · This intervention has created a model for expanding testing to other groups. Still, only Division One athletes receive testing at this time.		Screening for a sickle cell trait in Division One athletes is active.
6. Implementation of the NCAA Sickle Cell Trait Screening Policy: A Survey of Athletic Staff and Student- athletes [44] (2018)		· The National Collegiate Athletic Association (NCAA) implemented mandatory testing for sickle cell trait status among all student athletes participating in Division One sports in 2010. · Two online surveys were used to assess knowledge, perspectives, and experiences with the NCAA Division One Sickle Cell Trait Screening Policy.		10 NCAA D1 Colleges and universities in North Carolina from January- June 2014.	228 student-athletes, 32 athletic trainers, and 43 coaches.	· 63% of student athletes supported the idea of required screening. Many felt strongly that the screening should be mandatory regardless of race/ethnicity (66%) or sport (71%). · 13% of student-athletes felt that non-black student-athletes did not have to be concerned with testing. · Some student-athletes did not know whether they had been tested (22%) or indicated they had not been (10%) offered sickle cell trait screening by their athletic departments.		Screening for a sickle cell trait in Division One athletes is active.
6. Implementation of the NCAA Sickle Cell Trait Screening Policy: A Survey of Athletic Staff and Student-athletes [44] (2018)		· The National Collegiate Athletic Association (NCAA) implemented mandatory testing for sickle cell trait status among all student athletes participating in Division One sports in 2010. · Two online surveys were used to assess knowledge, perspectives, and experiences with the NCAA Division One Sickle Cell Trait Screening Policy.		10 NCAA D1 Colleges and universities in North Carolina from January- June 2014.	228 student- athletes, 32 athletic trainers, and 43 coaches.	· After screening, 35% of student-athletes wanted to know more about the reasons for screening and 23% of student-athletes who tested negative for a sickle cell trait wanted to know more about sickle cell trait. · Twenty-eight percent (28%) of coaches, but no ATs, reported that at least one student-athlete at their institution had been removed from activity because of concern of developing a dangerous sickle cell trait-related condition. · Almost all student-athletes with a sickle cell trait said that more education and information about sickle cell trait would be helpful to them. · Four students learned their status through the NCAA policy and were notified in person (two), by email (one), and by mail (one). All four had questions about sickle cell trait and the implications of their positive status, but only one received genetic counseling. · The primary benefits of the screening policy identified by student- athletes with a sickle cell trait was that it created awareness among athletic staff and student-athletes that could help avoid adverse outcomes and could offer information for future family planning. · More education about sickle cell trait is needed for student-athletes and athletic staff in order to help make the implementation more successful. All parties need to be in agreement regarding the importance of knowing which student-athletes have a sickle cell trait and how that information will be utilized.		Screening for a sickle cell trait in Division One athletes is active.
7. Athletes’ Perceptions of National Collegiate Athletic Association -Mandated Sickle Cell Trait Screening: Insight for Academic Institutions and College Health Professionals [48] (2010)		· The National Collegiate Athletic Association (NCAA) implemented mandatory testing for sickle cell trait status among all student athletes participating in Division One sports in 2010. · The study objective was to explore athletes’ perspectives of National Collegiate Athletic Association (NCAA)-mandated sickle cell trait-screening policy by examining race-and gender-related differences in athletes’ perceptions regarding risk of having a sickle cell trait and concern about loss of playing time.		Southeastern college campus in the US during April- August of 2010.	259 college athletes.	· The majority of athletes (81.7%) perceived that they would have a high level of concern if found to carry a sickle cell trait. · African Americans were 9.07 times more likely than Caucasians to perceive risk of having a sickle cell trait. · The majority of athletes disagreed (38.4%) or did not know (50.8%) if they would lose playing time related to carrying a sickle cell trait.		Screening for a sickle cell trait in Division One athletes is active.
8. A Policy Impact Analysis of the Mandatory NCAA Sickle Cell Trait Screening Program [49] (2012)		· The NCAA implemented mandatory sickle cell trait screening for all Division One athletes, proof of previous test, or signed waiver releasing the school from liability.		Colleges and Universities in the US with Division One athletes.	All Division One College Athletes.	· Screening efforts identified over 2,000 sickle cell trait carriers over a four-year period. · Screening efforts could prevent 7 student athlete deaths over the course of a decade (1 in every 144,181 students screened). · Annual estimates of identifying 530 new sickle cell trait carriers. · ⅓ of students report wanting to learn more information behind the reasoning of NCAA screening and 1/4 of students report wanting to learn more about having a sickle cell trait.		Screening for a sickle cell trait in Division One athletes is active.