National Alliance of Sickle Cell Centers Consensus Recommendations on Sickle Cell Disease Health Maintenance
People with SCD require coordinated and consistent care starting soon after birth in an SCD center and throughout their lives; SCD is a chronic condition with a highly heterogenous phenotype necessitating lifelong care through an SCD center in collaboration with clinicians in multiple areas of medicine including primary care. Future work should prioritize the management of timing of initiation and precision use of disease-modifying therapies, infection management and prevention, and discussion on transformative therapies.
Authors
- Deepa Manwani (ORCID: https://orcid.org/0000-0003-1057-1811)
- Monica L. Hulbert (ORCID: https://orcid.org/0000-0001-8933-0046)
- Parul Rai (ORCID: https://orcid.org/0000-0002-5770-7280)
- Amma Owusu‐Ansah (ORCID: https://orcid.org/0000-0002-6476-0522)
- Ravi Talati
- Angeli Rampersad (ORCID: https://orcid.org/0000-0002-9330-7604)
- Seethal A. Jacob (ORCID: https://orcid.org/0000-0003-2906-6102)
- Francis Coyne
- Patrick McGann (ORCID: https://orcid.org/0000-0003-1548-9438)
- Julie Kanter (ORCID: https://orcid.org/0000-0001-7002-8891)
- Andrew R. W. O’Brien
- Sophie Lanzkron (ORCID: https://orcid.org/0000-0002-2878-0251)
- Neha Bhasin
- Anthony Villella (ORCID: https://orcid.org/0000-0002-5085-8107)
- Vishwas Sakhalkar
- Crawford Strunk (ORCID: https://orcid.org/0000-0003-1954-2929)
- R Eric Miller (ORCID: https://orcid.org/0000-0001-9530-6181)
- Melissa Frei‐Jones (ORCID: https://orcid.org/0000-0001-9757-5406)
- Sana Saif-Ur-Rehman (ORCID: https://orcid.org/0000-0002-3830-243X)
Institutions
- Boston Children's Hospital (US)
- St. Jude Children's Research Hospital (US)
- Nationwide Children's Hospital (US)
- Rhode Island Department of Health (US)
- Thomas Jefferson University (US)
- The University of Texas at San Antonio Health Science Center (US)
- Washington University in St. Louis (US)
- Augusta University (US)
- Brown University (US)
- Riley Hospital for Children (US)
- University of Rochester Medical Center (US)
- University of Alabama at Birmingham (US)
- Cleveland Clinic Lerner College of Medicine (US)
- Augusta University Health (US)
- Center for Cancer and Blood Disorders (US)
- Innovative Clinical Research (US)
- UCSF Benioff Children's Hospital (US)
- Boston Children's Museum (US)
- Rainbow Babies & Children's Hospital (US)
- Indiana University School of Medicine
- Indiana University – Purdue University Indianapolis (US)
Publication Details
- Journal
- JAMA Network Open
- Published
- 2025-11-13
- DOI
- https://doi.org/10.1001/jamanetworkopen.2025.43421
- Citations
- 4
- Primary Topic
- Hemoglobinopathies and Related Disorders
- Type
- article
- Field-Weighted Citation Impact
- 6.50