• NHLBI Recruitment and Engagement in Care to Impact Practice Enhancement (RECIPE) for Sickle Cell disease
  1 R01 HL158807-01/ subaward
  mPI: Kanter, Hsu, Jacobs, Treadwell
  Date: 7/1/2022 – 6/30/2027
  Major Goals: Use implementation science to reduce the science-to-practice gap in sickle cell disease (SCD) by identifying individuals with SCD who are not receiving expert care and link them to care.
  Role: multi-PI

• HRSA, Maternal Child Health Bureau: Sickle Treatment and Outcomes Research in the Midwest (STORM)
  2U1EMC27863-08-00/315569 / HRSA-21-032
  PI: Shook
  Date: 10/1/21 – 9/30/26
  Major Goals: Improve access to care and outcomes for sickle cell care by bringing together hematology and primary care communities to collaborate with patients and families on quality improvement.
  Role: site PI

• African Research and Innovative Initiative for Sickle Cell Education: Improving Research Capacity for Service Improvement (ARISE)
  European Commission H2020-MSCA-RISE-2018
  PI: Bonifazi
  Date: 01/01/19 – 10/1/24
  Major Goals: The goal of this study is to let European faculty and staff come to UIC to help build capacity for sickle cell newborn screening in Nigeria. Hsu has leadership role for a working group on health education.
  Role: Co-Investigator

• DSCC Sickle Transition Adolescent-Adult Readiness (STAR) program
• IDPH newborn screening follow-up

• UIC Award for Creative Activity – Walk in My Shoes – Use skits for training healthcare providers on better communication with patients during sickle cell pain episodes 2022-2024

• KIND-VR and Dunkin’ Joy Foundation – virtual reality as a component of distraction for children in pain or during procedures
• Baskin-Robbins Foundation – child life support for pediatric inpatients and outpatients.

• European Commission ARISE project 2019-2024 – Exchange scientific visitor program to build capacity for sickle cell care and research in Africa.

Using the frameworks and tools of implementation Science holds great promise for bringing evidence-based “best practices” to more people with sickle cell disease and reducing the health disparities. Hsu has learned implementation science by immersion in leadership roles in the Sickle Cell Disease Implementation Consortium and in the African Research and Innovative Initiative for Sickle Cell Education project. Applying these frameworks for the introduction of new programs that adapts to local needs holds great interest for Nigeria.

• DiMartino LD, Baumann AA, Hsu LL, Kanter J, Gordeuk VR, et al.; Sickle Cell Disease Implementation Consortium. The sickle cell disease implementation consortium: Translating evidence-based guidelines into practice for sickle cell disease. Am J Hematol. 2018 Dec;93(12):E391-E395.
• Inusa BPD, Anie KA, Lamont A, Dogara LG, Ojo B, Ijei I, Atoyebi W, Gwani L, Gani E, Hsu L. Utilising the ‘Getting to Outcomes®’ Framework in Community Engagement for Development and Implementation of Sickle Cell Disease Newborn Screening in Kaduna State, Nigeria. Int J Neonatal Screen. 2018 Nov 16;4(4):33. doi: 10.3390/ijns4040033. PMID: 33072954; PMCID: PMC7510187.
• Tayo BO, Akingbola TS, Saraf SL, Shah BN, Ezekekwu CA, Sonubi O, Hsu LL, Cooper RS, Gordeuk VR. Fixed Low-Dose Hydroxyurea for the Treatment of Adults with Sickle Cell Anemia in Nigeria. Am J Hematol. 2018 May 14. doi: 10.1002/ajh.25143.
• Wandersman A, Alia K, Cook B, Hsu LL, Ramaswamy R. Evidence-based interventions are Necessary but Not Sufficient for Achieving Outcomes in Each Setting in a Complex World: Empowerment Evaluation, Getting To Outcomes, and Demonstrating Accountability. Am J Evidence Aug 2016 Vol 37 issue: 4, page(s): 544-561. DOI:10.1177/1098214016660613).

Hsu is an active participant in multicenter clinical trials that have blossomed in the sickle cell field, with funding by both NIH and pharmaceutical industry. Other clinical research experience with Nigerian collaborators now includes qualitative research on quality of life and a hydroxyurea clinical trial.

• Tambor E, Robinson M, Hsu L, Chang HY, Al Naber J; coreSCD Panel. coreSCD: multi-stakeholder consensus on core outcomes for sickle cell disease clinical trials. BMC Med Res Methodol. 2021 Oct 19;21(1):219. doi: 10.1186/s12874-021-01413-8. PMID: 34666680; PMCID: PMC8524872.
• Casella JF, Barton BA, Kanter J, Black LV, Majumdar S, Inati A, Wali Y, Drachtman RA, Abboud MR, Kilinc Y, Fuh BR, Al-Khabori MK, Takemoto CM, Salman E, Sarnaik SA, Shah N, Morris CR, Keates-Baleeiro J, Raj A, Alvarez OA, Hsu LL, Thompson AA, et al., Gladwin MT. Effect of Poloxamer 188 vs Placebo on Painful Vaso-Occlusive Episodes in Children and Adults With Sickle Cell Disease: A Randomized Clinical Trial. JAMA. 2021 Apr 20;325(15):1513-1523. doi: 10.1001/jama.2021.3414. PMID: 33877274.
• Carden MA, Brousseau DC, Ahmad FA, Bennett J, Bhatt S, Bogie A, Brown K, Casper TC, Chapman LL, Chumpitazi CE, Cohen D, Dampier C, Ellison AM, Grasemann H, Hickey RW, Hsu LL, Leibovich S, Powell E, Richards R, Sarnaik S, Weiner DL, Morris CR; Sickle Cell Disease Arginine Study Group and the Pediatric Emergency Care Applied Research Network (PECARN). Normal saline bolus use in pediatric emergency departments is associated with poorer pain control in children with sickle cell anemia and vaso-occlusive pain. Am J Hematol. 2019 Jun;94(6):689-696. doi: 10.1002/ajh.25471. Epub 2019 Apr 29. PMID: 30916794; PMCID: PMC6510594.
• Hsu LL, Sarnaik S, Williams S, Amilon C, Wissmar J, Berggren A; HESTIA1 Investigators. A dose-ranging study of ticagrelor in children aged 3-17 years with sickle cell disease: a two-part phase 2 study. Am J Hematol. 2018 Sep 6. doi: 10.1002/ajh.25273. PMID: 30187935

Numerous barriers to healthcare and clinical research are faced by sickle cell disease patients because this is a rare disease with minority health disparities and a heterogeneous disease course whose current therapy is only partially successful. Helping patients and families to understand the complexities of sickle cell disease helps to empower them to overcome these problems. A large part of his career is devoted to health education for families with sickle cell (books, websites, videos, and health fairs). He co-authored a set of 3 books that are widely used in sickle cell centers and community groups in the USA and in Brazil (“Hope and Destiny” for parents, “Hope & Destiny, Jr” for teens, “Hope & Destiny Jr. Workbook” for children) to explain self-care and also the advances in care through research.

• Tam T, Baer MR, Hsu LL, Law JY. An Electronic Teaching Module for Improving Knowledge of Self-Management of Vaso-Occlusive Pain Crises in Patients With Sickle Cell Disease: Pilot Questionnaire Study. JMIR Mhealth Uhealth. 2019 Jun 20;7(6):e13501. doi: 10.2196/13501. PubMed PMID: 31223120; PubMed Central PMCID: PMC6610466.
• Narcisse L, Walton EA, Hsu LL. Summer Camps for Children with Sickle Cell Disease. Ochsner J. 2018 Winter;18(4):358-363. doi: 10.31486/toj.18.0045. Review. PubMed PMID: 30559621.
• Hsu LL, Green NS, Ivy ED, Neunert C, Smaldone A, Johnson S, Castillo S, Castillo A, Thompson T, Hampton K, Strouse JJ, Stewart R, Hughes T, Banks S, Smith-Whitley K, King A, Brown M, Whitten-Shurney W, Ohene-Frempong K, Smith WR, Martin M. Community Health Workers as Support for Sickle Cell Care. A White Paper. Am J Prev Med. 2016 July. doi: 10.1016/j.amepre.2016.01.016.
• Olorunyomi OO, Liem RI, Hsu LL. Motivators and Barriers to Physical Activity among Youth with Sickle Cell Disease: Brief Review. Children (Basel). 2022 Apr 17;9(4):572. doi: 10.3390/children9040572.

• Dr. Lewis Hsu's Bibliography