Approaches to Effective Therapeutic Management of Pain for People With Sickle Cell Disease (SCD)

Date: July 21, 2021 to July 22, 2021

Location: Virtual

Event Description

This National Institutes of Health (NIH) workshop will focus on sickle cell disease pain. Researchers will explore critical gaps and research challenges as well as brainstorm potential solutions for this grossly understudied pain condition in a highly underserved population. This fits into the NIH mission of seeking fundamental knowledge to enhance health.

The National Center for Complementary and Integrative Health (NCCIH) and the National Heart, Lung, and Blood Institute (NHLBI) are leading the meeting planning for this workshop. Collaboration partners at NIH include the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), National Institute on Drug Abuse (NIDA), National Institute on Minority Health and Health Disparities (NIMHD), National Institute of Neurological Disorders and Stroke (NINDS), and National Institute of Nursing Research (NINR). 

Dates:

Wednesday, July 21; 11:30 a.m.–5:30 p.m.
Thursday, July 22; 11:30 a.m.–5:30 p.m.

  • Co-Leads: NCCIH and NHLBI
  • Collaboration Partners: NICHD, NIDA, NIMHD, NINDS, NINR

Sickle Cell Disease Workshop image

Watch Day 1:

Agenda

July 21, 2021

11:30 a.m.–11:45 a.m. | Welcome 

Helene Langevin, M.D., Director, NCCIH

11:45 a.m.–12:00 p.m. | Opening remarks

Francis S. Collins, M.D., Ph.D., Director, NIH

12:00–12:30 p.m. | Keynote—Wally Smith, M.D., Virginia Commonwealth University. Reconceptualizing pain in SCD

12:30–12:35 p.m. | Questions and answers from NIH VideoCast audience

Session 1: Understanding Acute and Chronic SCD Pain: What Do We Know?

12:35–1:55 p.m. Expert group 1—biology of SCD pain

Robert Hebbel, M.D., University of Minnesota. Sickle cell anemia: vaso-occlusion

Kalpna Gupta, Ph.D., University of California, Irvine. Chronic pain in SCD: molecular mechanisms and the contribution of the environment

Panel commentary (approximately 2 minutes per panelist)

  • Jay Shah, M.D., NIH Clinical Center. Potential connections between myofascial and skeletal tissues and acute and chronic SCD pain
  • Anjulika Chawla, M.D., Brown University. Gaps in knowledge in the musculoskeletal aspects of SCD pain
  • Richard Harris, Ph.D., University of Michigan. Neuroimaging of chronic SCD pain
  • Allison King, M.D., Ph.D., Washington University in St. Louis. Cognitive aspects of acute and chronic SCD pain

Panel discussion. Moderators: Wen Chen, Ph.D., NCCIH; William Tonkins, Ph.D., NHLBI 

  • What are the major gaps in our current knowledge of the biology underlying acute and chronic SCD pain?
  • What tools, methodology, technology, animal models, or additional resources are needed to fill these knowledge gaps?

Questions and answers from NIH VideoCast audience

1:55–2:05 p.m. Break

2:05–3:05 p.m. Expert group 2—psychosocial and environmental factors impacting SCD pain

Cecelia Valrie, Ph.D., Virginia Commonwealth University. The impact of psychological factors and sleep on acute or chronic SCD pain

Shawn Bediako, Ph.D., NHLBI. Social and ecological contexts of acute and chronic SCD pain

Panel commentary (approximately 2 minutes per panelist)

  • Soumitri Sil, Ph.D., Emory University. Pediatric acute and chronic SCD pain: psychosocial outcomes
  • Lori Crosby, Psy.D., Cincinnati Children’s Hospital Medical Center. Socioeconomic effects on acute and chronic SCD pain

Panel discussion. Moderators: Shawn Bediako, Ph.D., NHLBI; Nishadi Rajapakse, Ph.D., NHLBI (formerly NIMHD)  

  • What are the major gaps in current knowledge regarding the psychosocial and environmental factors influencing acute and chronic SCD pain?
  • What tools, methodology, technology, policies, guidelines, or additional resources are needed to fill these knowledge gaps?

Questions and answers from NIH VideoCast audience

3:05–4:00 p.m. Expert group 3—genetics/microbiome factors impacting SCD pain

Amanda Brandow, D.O., Medical College of Wisconsin. The role of the microbiome in the development of acute and chronic SCD pain

Zaijie (Jim) Wang, Ph.D., University of Illinois, Chicago. Genetic factors influencing acute and chronic SCD pain

Panel commentary

  • Seena Ajit, Ph.D., Drexel University. Molecular mechanisms underlying acute and chronic pain, with emphasis on epigenetics

Panel discussion. Moderators: Inna Belfer, M.D., Ph.D., NCCIH; Karen C. Lee, M.D., M.P.H., NICHD

  • What are the major gaps in current knowledge related to the genetic, epigenetic, and microbiome factors influencing acute and chronic SCD pain?
  • What tools, methodology, technology, animal models, or additional resources are needed to fill these knowledge gaps?

Questions and answers from NIH VideoCast audience

4:00–4:10 p.m. Break

4:10–4:20 p.m. Patient perspective, Lakiea Bailey, Ph.D., Sickle Cell Consortium. Living with SCD: my pain story

4:20–5:20 p.m. Roundtable discussion 1—challenges and opportunities for understanding acute and chronic SCD pain

Lead discussants

  • Daniel Clauw, M.D., University of Michigan. Summary of responses from invited participants to the question about knowledge gaps and research opportunities for research on acute and chronic SCD pain
  • Theodore Price, Ph.D., University of Texas at Dallas. Summary of responses from invited participants to the question about the tools, methodology, technology, policies, guidelines, animal models, and additional resources needed to address acute and chronic SCD pain
  • Roger Fillingim, Ph.D., University of Florida. Summary of responses from invited participants to the question about aspects of research on other pain conditions that could be applied to research on acute and chronic SCD pain

5:20–5:30 p.m. | Closing remarks

Emmeline Edwards, Ph.D., Director, Division of Extramural Research, NCCIH

5:30 p.m. Adjourn


Watch Day 2:

July 22, 2021

11:30–11:40 a.m. | Welcome back

Gary H. Gibbons, M.D., Director, NHLBI

11:40–11:50 a.m. | Opening remarks

Rebecca G. Baker, Ph.D., Director, NIH HEAL (Helping to End Addiction Long-termSM) Initiative

11:50 a.m.–12:20 p.m. | Keynote—Cheryl Stucky, Ph.D., Medical College of Wisconsin. Sickle cell pain chasm 2021: knowns, unknowns, and bridges forward

Session 2: Challenges and Opportunities for Optimizing SCD Pain Management

12:20–1:25 p.m. | Expert group 4—measuring pain and sequelae in patients for clinical trials

Thomas Coates, M.D., University of Southern California. Acute and experimental pain

Diana Wilkie, Ph.D., R.N., University of Florida. Clinical presentation of chronic SCD pain: descriptors and phenotypes

Panel commentary (approximately 2 minutes per panelist)

  • William Zempsky, M.D., M.P.H., University of Connecticut. Systematic approaches to pediatric acute and chronic SCD pain, location of pain, and PhenX measures
  • Carlton Dampier, M.D., Emory University. Quality of life in children with chronic SCD pain, epidemiology
  • Nitya Bakshi, M.D., M.S., Emory University. Pain variability and pain phenotypes in SCD
  • Laura De Castro, M.D., M.H.Sc., University of Pittsburgh. Patterns and correlates of daily chronic SCD pain, lessons from contemporary drug trials in acute and chronic pain measurement

Panel discussion. Moderators: Will Aklin, Ph.D., NIDA; Smriti Iyengar, Ph.D., NINDS

  • Other than pain severity, what outcomes should be measured in clinical trials studying SCD pain management interventions?
  • What functional outcomes, co-occurring conditions, or social determinants of health measures are important to patients or are critical confounders that should be considered in analytic plans?

Questions and answers from NIH VideoCast audience

1:25–1:35 p.m. | Break

1:35–2:40 p.m. | Expert group 5—current or promising treatments for acute and chronic SCD pain

C. Patrick Carroll, M.D., Johns Hopkins University. Treatment strategies to manage acute and chronic SCD pain

Judith Schlaeger, Ph.D., University of Illinois, Chicago. Managing chronic SCD pain with nonpharmacologic approaches

Panel commentary (approximately 2 minutes per panelist)

  • Ardith Doorenbos, Ph.D., R.N., University of Illinois, Chicago. Acupuncture and guided relaxation: complementary and integrative therapies for SCD pain
  • Michael V. Vitiello, Ph.D., University of Washington. The potential of cognitive behavioral therapy for insomnia to manage chronic pain and comorbid insomnia
  • Bin He, Ph.D., Carnegie Mellon University. Ultrasound neuromodulation for acute and chronic SCD pain management
  • Lynnette Kaid, SorsaMED. Potential therapeutic proteins infused with cannabinoids for chronic SCD pain management
  • Alexis Leonard, M.D., NHLBI. Residual chronic pain following gene therapy for SCD
  • Deepika Darbari, M.B.B.S., M.S., Children’s National Hospital. Persistence of pain post stem cell transplantation in SCD

Panel discussion. Moderators: Jeri Miller, Ph.D., NINR; Della White, Ph.D., NCCIH

  • What effective treatments or models relevant to SCD pain management could be adopted, adapted, integrated, or scaled up in various health care systems?
  • What promising multidisciplinary and multilevel interventions or multicomponent delivery models are ready for multisite efficacy or effectiveness trials for SCD pain management and related function? 

Questions and answers from NIH VideoCast audience

2:40–3:40 p.m. | Expert group 6—overcoming challenges of evidence-based pain management: patient engagement, stigma, bias, and access to quality care

Patricia Kavanagh, M.D., Boston University. Addressing implementation and access to quality care challenges in SCD pain care 

Coretta Jenerette, Ph.D., R.N., University of South Carolina. Addressing stigma and bias challenges in SCD pain care

Panel commentary (approximately 2 minutes per panelist)

  • Roger Fillingim, Ph.D., University of Florida. Addressing disparities and other potential challenges in SCD pain management
  • Shan-Estelle Brown, Ph.D., Rollins College. Using cultural competence/sensitivity approaches and minimizing structural barriers to improve SCD pain management
  • Jerlym Porter, Ph.D., M.P.H., St. Jude Children’s Research Hospital. Challenges of acute and chronic SCD pain management in the transition to adult care

Panel discussion. Moderators: Susan Shero, M.S., R.N., NHLBI; Wendy Weber, N.D., Ph.D., M.P.H., NCCIH

  • What successful strategies from other fields could be evaluated in trials to address stigma, enhance access to quality care, reduce bias, and overcome structural barriers in acute and chronic SCD pain management?

Questions and answers from NIH VideoCast audience

3:40–3:50 p.m. | Break

3:50–4:00 p.m. | Patient perspective, Shauna Whisenton, American Society of Hematology Research Collaborative. Living with SCD: personal experience with acute and chronic pain management after SCD cure

4:00–5:20 p.m. | Roundtable discussion 2—building a future in which SCD pain management can be optimized

Lead discussants

  • Sophie Lanzkron, M.D., M.H.S., Johns Hopkins University. Summary of responses from invited participants to the questions about (1) multidisciplinary and multilevel interventions or multicomponent delivery models that are ready for multisite efficacy or effectiveness trials for acute and chronic pain management, and (2) important functional measures to be considered for such clinical trials 
  • Wally Smith, M.D., Virginia Commonwealth University. Summary of responses from invited participants to the question about the barriers to and effective treatments and models for acute and chronic SCD pain management that could be adopted, adapted, integrated, and scaled up in various health care systems
  • Cheryl Stucky, Ph.D., Medical College of Wisconsin. Summary of responses from invited participants to the question about successful strategies from other fields that could be evaluated in trials to address stigma, enhance access to quality care, reduce bias, and overcome structural barriers in acute and chronic SCD pain management

5:20–5:30 p.m. | Closing remarks

Monica Webb Hooper, Ph.D., Deputy Director, NIMHD

5:30 p.m. | Adjourn


Individuals who need reasonable accommodation to participate should contact info@nccih.nih.gov or the Federal Relay, 1-800-877-8339, by Wednesday, July 14.