RESEARCH DISSEMINATION
Publications Presentations

SCDIC Presentations

2023

Hankins JS, Brambilla D, Potter MB, Kutlar A, Gibson R, King AA, Baumann AA, Melvin CL, Gordeuk V, Hsu L, Nwosu C, Porter J, Alberts NM, Badawy S, Simon J, Glassberg JA, Lottenberg R, DiMartino L, Jacobs S, Fernandez ME, Bosworth HB, Klesges LM, Shah N; the Sickle Cell Disease Implementation Consortium. Multi-level mHealth Intervention Boosts Hydroxyurea Adherence in Patients with Sickle Cell Disease. ASPHO Conference, May 10-13, 2023.

2022

Gibson R. Sickle Cell Disease Implementation Consortium. Global Congress on Sickle Cell Disease, June 16-18, 2022.

Gibson R, Chukwudozie B, Lawrence D, Reynolds B, Hsu L, Gollan S, Hankins J, Tanabe P, Parikh P, Ibemere S, Stevenson E. Findings from the Sickle Cell Disease Implementation Consortium (SCDIC-I). Panel Session. NHLBI Sickle Cell Disease Research Annual Meeting, August 8-10, 2022.

   Individual Panel Presentations

  1. Gibson R. Overview of the SCDIC.
  2. Chukwudozie B, Lawrence D, Reynolds B, Hsu L. Transforming Sickle Cell Care - A Collaborative Journey: Value of a Community Stakeholder Advisory Board.
  3. Gibson R, Gollan S. Lifetime Narratives from Unaffiliated individuals with SCD.
  4. Hankins J. Multi-level Influential Factors of Hydroxyurea Adherence in Sickle Cell Disease.
  5. Tanabe P. ALIGNing Expectations for the Treatment of VOE in the ED.
  6. Parikh P. Evaluation of the Impact of COVID-19 on Individuals with Sickle Cell Disease in the U.S. Using Patient Reported Outcomes.
  7. Ibemere S. High Body Mass Index in Adults with Sickle Cell Disease: A Report from the Sickle Cell Disease Implementation Consortium Registry.
  8. Stevenson E. Fertility and Infertility Outcomes Among Males Females with Sickle Cell Disease in the SCDIC Registry.

Howell K. Burden of Health Outcomes Among Adolescents and Young Adults with Sickle Cell Disease. Foundation for Sickle Cell Disease Research, June 12-14, 2022.

2021

DiMartino L. Implementation and Effectiveness of mHealth Apps for Improving Sickle Cell Disease Care During COVID-19: A Mixed-Methods Evaluation. Conference on the Science of Dissemination and Implementation in Health, December 14-16, 2021.

2020

Calhoun C. Relationship Between Health Literacy and Cognition Amongst Adolescents and Young Adults with Sickle Cell Disease. American Society for Pediatric Hematology/Oncology, May 6-9, 2020 (Cancelled).

Gordeuk V. Hydroxyurea Use is Associated with Adverse Outcomes of Pregnancy in Sickle Cell Disease. ASH Annual Meeting, December 5-8, 2020.

Hankins J. Integration of mHealth Into the Care of Patients with SCD to Increase HU Utilization - mESH Study. Molecular Medicine Tri-Conference, March 1-4, 2020.

Hankins J. Rationale and Design of the Sickle Cell Disease Implementation Consortium (SCDIC).  Molecular Medicine Tri-Conference, March 1-4, 2020.

Jacobs S. Identifying Barriers to Care to Develop Novel Recruitment Strategies for Individuals with Sickle Cell Disease. Conference on the Science of Dissemination and Implementation in Health, December 15-17, 2020.

Kanter J. Autoimmune Disease is Associated with Greater Risk of Co-Morbidity among Teens and Adults in the Sickle Cell Disease Implementation Consortium. European Hematology Association, June 11-21, 2020.

Knisely M. Severe Pain Profiles in Patients with SCD: A Duke Report. International Association for the Study of Pain World Congress, August 4-8, 2020 (Cancelled).

Masese R. Predictors of Maternal Morbidity and Perinatal Morbidity and Mortality Among Participants Enrolled in the SCDIC Registry. ASH Annual Meeting, December 5-8, 2020.

Masese R. Sex-Based Differences in Sickle Cell Disease: Report from the Sickle Cell Disease Implementation Consortium. ASH Annual Meeting, December 5-8, 2020.

Tanabe P, Hankins J, Lamont A, Kanter J, Treadwell M, Gordeuk V. Findings from the Sickle Cell Disease Implementation Consortium. NHLBI Sickle Cell Disease Research Annual Meeting, August 10-12, 2020.

   Individual Panel Presentations

  1. Tanabe P. Overview of the Sickle Cell Disease Implementation Consortium – SCDIC and a Protocol to Improve ED Care Using Individualized Pain Plans.
  2. Hankins J. Early Findings from the Integration of mHealth into the Care of Patients with Sickle Cell Disease to Increase Hydroxyurea Utilization (mESH Study).
  3. Lamont A. Moving the Needle in Sickle Cell Care: Expert Consensus on What Determines an Unaffiliated Patient.
  4. Kanter J. Quality of Care Among Adolescents and Adults with SCD in the US: Analysis from the SCDIC
  5. Treadwell M. Patient Reported Outcomes in the Sickle Cell Disease Implementation Consortium Registry.
  6. Gordeuk V. Hydroxyurea is Associated with Miscarriage and Stillbirth.

2019

Calhoun C. Health Literacy in Adolescents and Adults with Sickle Cell Disease. ASH Annual Meeting, December 7-1, 2019.

Crego N. Barriers and Facilitators of Emergency Care for individuals with Sickle Cell Disease Living in Central North Carolina; The Patient Perspective. Black Communities Conference, September 9-11, 2019.

DiMartino L. Integration of mHealth Into the Care of Patients with SCD to Increase HU Utilization - mESH Study. Conference on the Science of Dissemination and Implementation in Health, December 4-6, 2019.

Hankins J. Hydroxyurea Adherence in Sickle Cell Disease. American Society for Pediatric Hematology/Oncology, May 1-4, 2019.

Harris K. The Relationship between Mental Health, Educational Attainment, Employment outcomes, and Pain in Sickle Cell Disease. ASH Annual Meeting, December 7-10, 2019.

Mendez G. Characterizing the Role of Social Determinants of Health in Affiliated and Unaffiliated Sickle Cell Patients. Foundation for Sickle Cell Disease Research, June 7, 2019.

Mendez G. Characterizing the Role of Social Determinants of Health in Affiliated and Unaffiliated Sickle Cell Patients in the SCDIC Registry. ASCAT, December 7-10, 2019.

Treadwell M. ASCQ-Me and PROMIS in the Sickle Cell Disease Implementation Consortium Needs Assessment: Follow-up. HealthMeasures Users Conference, June 5-6, 2019.

Treadwell M. The Sickle Cell Disease Implementation Consortium: Needs Assessment, Registry and Implementation Science Research Studies. NHLBI Sickle Cell Disease Research Annual Meeting, August 12-14, 2019.

2018

Alberts N. User-Centered Design of a Mobile App for Increasing Adherence to Hydroxyurea in Sickle Cell Disease. International Society for Research on Internet Interventions (ISRII), 2018.

Calhoun C. Improving Transitions of Care for Young Adults with SCD: A Qualitative Needs Assessment for Intervention Design. NMHD Saunders Watkins Leadership Workshop, May 22-23, 2018.

Cole O. Characteristics of Affiliated vs. Non-affiliated Sickle Cell Patients at a Major Comprehensive Sickle Cell Center in Chicago. Foundation for Sickle Cell Disease Research, June 17, 2018.

DiMartino L. Implementation of Guideline-Based Care for Sickle Cell Disease: Findings from a Mixed Methods Needs Assessment. Conference on the Science of Dissemination and Implementation in Health, December 3-5, 2018.

Famutimi C. Motivations to Enroll or Not to Enroll in a Sickle Cell Disease Registry. Foundation for Sickle Cell Disease Research, June 17, 2018.

Hsu L, Gibson R, King A. Sickle Cell Disease Implementation Consortium (SCDIC). Panel Session, Foundation for Sickle Cell Disease Research, June 17, 2018.

Individual Presentations

  1. Hsu L. Introducing the SCDIC.
  2. Gibson R. SCDIC Needs Assessment and Registry.
  3. King A. SCDIC Working Groups for Interventions.

Tanabe P, Treadwell M, Hankins J. Sickle Cell Disease Implementation Consortium (SCDIC). Panel Session, NHLBI Sickle Cell Disease Research Annual Meeting, August 13-15, 2018.

            Individual Presentations

  1. Tanabe P. Introducing the SCDIC.
  2. Treadwell M. SCDIC Needs Assessment and Registry.
  3. Hankins J. Implementation Research Studies.

2017

Baumann A. Sickle Cell Disease Implementation Consortium (SCDIC): Findings from the First Year. Conference on the Science of Dissemination and Implementation in Health, December 4-6, 2017.

Treadwell M. ASCQ-Me and PROMIS in the Sickle Cell Disease Implementation Consortium Needs Assessment and Registry. HealthMeasures User Conference, November 17, 2017.

Living with Sickle Cell Disease--Patient Perspectives on Education and Self-Management (ISAAC) [presentation]