Attendees

NHLBI Staff: Dr. Julie Panepinto (Executive Secretary), Dr. Traci Mondoro, Juan Salomon Andonie, Dr. Idalia Yabe

Committee Members: Dr. Titilope Fasipe (Chair), Dr. Stella T. Chou, Dr. Nancy Green, Dr. Santosh Saraf, Dr. Yogen Saunthararajah, Dr. Vivien Sheehan, Dr. Eboni Lance

Ad hoc Subject Matter Experts: Dr. Sarah Reeves, Dr. Angela Rivers, Dr. Oyebimpe Adesina, Mr. Moses Akpan, Ms. Pamela White, Dr. Cece Calhoun

Guest Speakers: Dr. Lauren Klein (Vanderbilt), Dr. Ellen Fung (UCSF), Dr. Amanda Brandow (Medical College of Wisconsin)

Opening Remarks

Dr. Panepinto welcomed attendees and reiterated the committee's charge to advise NIH, NHLBI, and Blood Division Directors on SCD research priorities. The meeting theme — nutrition and SCD — was framed as critically relevant, understudied, and aligned with NIH's MAHA strategic framework. Dr. Fasipe highlighted holistic approaches to SCD care and the importance of lived-experience perspectives, nutrition, gut microbiome research, and food access.

Presentation Summaries

Dr. Lauren Klein – "Improving Nutrition and Growth in Children with SCD: Evidence Gaps and Lessons from Northern Nigeria" Dr. Klein presented evidence that children with SCD face elevated nutritional risk due to increased caloric and protein demands from chronic hemolysis, ongoing erythropoiesis, inflammation, and elevated cardiac energy expenditure — often compounded by reduced dietary intake — leading to growth faltering. Drawing on studies from Nigeria and high-income countries, she identified food insecurity, changing nutritional phenotypes, and the relationship between hydroxyurea and growth as key research priorities relevant to both low- and high-income settings.

Dr. Ellen Fung – "Micronutrients Matter: The Importance of Nutrition for Optimal Health in Patients with SCD" Dr. Fung reviewed micronutrient deficiencies in SCD, noting that poor diet, medication side effects, malabsorption, renal losses, and hypermetabolism all contribute. Deficiencies in vitamin D, folate, calcium, zinc, vitamin C, and protein are common. Vitamin D and zinc have the strongest evidence: vitamin D deficiency is linked to worse pain, inflammation, and emergency utilization, while zinc deficiency is associated with poor growth and increased complications. High-dose vitamins C and E showed no benefit and may worsen outcomes. Key gaps include the absence of standardized nutrition assessments, SCD-specific guidelines, and adequate trials across genotypes and age groups.

Dr. Amanda Brandow – "Investigating the Intestinal Microbiome in Individuals with SCD" Dr. Brandow presented findings showing that individuals with SCD have significantly lower gut microbial diversity and depletion of short-chain fatty acid (SCFA)-producing bacteria compared to controls. Lower heterogeneity was associated with higher acute pain frequency. Antibiotic exposure, opioid use, hydroxyurea, and disease-related gut barrier dysfunction were identified as likely contributors to dysbiosis. Proposed therapeutic approaches include SCFA supplementation, prebiotics, probiotics, and dietary interventions.

Discussion Highlights

The committee emphasized the dual burden of undernutrition and obesity, the limitations of BMI, and the value of DEXA for body composition assessment. Members advised against SCD-specific growth charts that could normalize poor growth, and called for longitudinal data on optimal growth trajectories. Food insecurity was identified as a major driver of outcomes. Additional priorities included inclusion of all SCD genotypes, effects of G6PD deficiency, organ dysfunction, and caregiver/maternal mental health. Longitudinal registries, "food as medicine" policy opportunities, and interdisciplinary collaboration were highlighted as key action areas.

Recommendations

1. Identified the need to develop multidisciplinary, evidence-informed clinical nutrition guidelines for SCD.
2. Support research focused on caloric, protein, and micronutrient needs in the context of current therapies (hydroxyurea, transfusion, biologics, and gene therapy) to inform nutritional requirements across the lifespan.
3. Support longitudinal studies of growth and nutrition — including pubertal development, body composition, bone mineral density, and long-term nutritional status — using registries and harmonized EMR data.
4. Expand intervention research beyond single nutrients to multi-nutrient and whole-diet trials reflecting real-world dietary patterns, with adequate duration, functional biomarkers, and statistical power.
5. Invest in mechanistic studies in human and animal models to clarify how nutrient deficiencies influence hemolysis, inflammation, pain, immune function, red cell stability, and organ damage.
6. Advance microbiome research to characterize the impact of dysbiosis and SCFA depletion on SCD pain and other complications, identify key drivers of dysbiosis, and evaluate interventions including prebiotics, probiotics, symbiotics, dietary fiber, and direct SCFA supplementation.
7. Distinguish nutritional deficiency replacement from pharmacologic micronutrient use, recognizing that each requires different clinical and research frameworks, endpoints, and trial designs.
8. Identified the need to integrate nutritional status, micronutrient monitoring considering compartmental studies, and DEXA-based body composition assessment into studies of disease-modifying and curative therapies.
9. Include all SCD genotypes and important co-occurring conditions (e.g., G6PD deficiency) in funded trials to better define genotype-specific nutritional phenotypes.
10. Identified the need to address food insecurity and social determinants of health through validated screening, outcomes research, and policy opportunities such as "food as medicine" programs.
11. Strengthen interdisciplinary and cross-sector collaboration by engaging experts across relevant fields and incorporating patient advocates and lived experience into research design and priority-setting.

Closing Remarks

Dr. Panepinto thanked all participants, noted that recommendations would be posted publicly with the meeting minutes per FACA requirements, and adjourned the meeting.

For those interested, the full meeting is available on NIH Videocast.