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Resources for healthcare providers

Clinical practice guidelines and information

ASH Clinical Practice Guidelines

ASH SCD Resources for Clinicians

NHLBI Evidence-based Management of SCD: Expert Panel Review, 2014 

CDC Sickle Cell Info for Healthcare Providers 

American College of Emergency Physicians ED SCD Care Coalition

Gene therapy resources

CURE Sickle Cell: Research Library

ASH Shared Decision Making

ASGCT Lunch and Learn Webinar: Gene Therapy 101

Scientific articles

CDC Scientific Articles about SCD

National Academies: Addressing SCD: A Strategic Plan and Blueprint for Action

ASH Research Collaborative Learning Community

CMS sickle cell disease action plan

CMS CGT Model

CMS SCD Action Plan

FDA-approved gene therapies for sickle cell disease

Casgevy and Lyfgenia: Two Gene Therapies for Sickle Cell Disease  The Medical Letter


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Lovotibeglogene autotemcel 

Clinical trials

Learn About Studies  ClinicalTrials.gov

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Sickle cell disease gene therapy education project

The Democratizing Education for Sickle Cell Disease Gene Therapy project developed patient-focused educational materials for the sickle cell community.

Understanding the blood cell

Learn about the different types of hemoglobin.

Doctor and patient

Understanding gene therapy approaches

A variety of approaches target the blood stem cells to relieve or reduce your symptoms of sickle cell disease.

Doctor and patient consultation

Navigating sickle cell disease gene therapy

Gene therapy for sickle cell disease is available to you through FDA-approved therapies and through clinical trials.

Your mental health and gene therapy

Your mental and physical health are deeply connected. Mental health is important for your overall health and quality of life.

A couple in discussion

Sickle cell disease gene therapy FAQ

Discuss these questions with your doctor or health care provider.

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Patient resources for sickle cell disease gene therapy

Sickle cell disease resources for patients

The Democratizing Education Project welcomes your feedback about the sickle cell disease gene therapy resources. Please email your comments or questions to DemocratizingEd@mail.nih.gov.

These educational materials are for informational purposes only. They are meant to promote your general understanding of gene therapy for sickle cell disease. We encourage you to use these educational materials to talk with your healthcare provider or a clinical trial team.

Last updated: September 27, 2024