• Research and Resources for Collaboration

  • Network with Adult Sickle Cell Providers

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  • Education on Clinical Management and Research Opportunities

The Sickle Cell Adult Provider Network (SCAPN)

The Sickle Cell Adult Provider Network (SCAPN) was established in 2002 with a mission to establish and support an interactive network for healthcare providers and investigators who serve adults with sickle cell disease.  This was the first, and remains the only, national organization that offers a home for healthcare professionals from multiple disciplines who focus on adult-oriented research, clinical care, provider education/training, mentorship and advocacy in sickle cell disease.


INSIGHTS Study on Sickle Cell Disease and Leg Ulcers at NIH.


The objective of the study is to: (1) utilize advanced next generation sequencing technologies to characterize the skin microbiome in sickle cell disease (SCD) patients living with and without leg ulcers and (2) employ social science approaches to identify psychosocial and physical environmental indicators that influence leg ulcer formation and SCD. This study will consist of two to three visits to the NIH in Bethesda, Maryland and travel and lodging will be provided.  Additionally, individuals with leg ulcers will also undergo wound care treatment during each visit. The information gleaned from this study will help guide treatment and interventions for those living with this SCD complication. All study participants will receive compensation for full participation in the study.


Eligibility: Individuals ≥ 18 years of age who have sickle cell disease or another red cell disorder and who may or may not have an active leg ulcer. Individuals with multiple leg ulcers are also encouraged to participate in the study.

For more information on the 
please feel free to contact us at: 
301-451-3997 or SCDLegUlcerStudy@mail.nih.gov

Contact information:
Keisha Findley, Ph.D.
(301) 443-1272



Caterina Minniti, M.D.
Sickle Cell Vascular Disease Section
National Heart, Lung, and Blood Institute
Hematology  Branch
Building 10CRC Room 5-5140
Bethesda MD 20892
Phone: 301-435-2345
Blackberry: 301-592-7517
E-mail: minnitic@nhlbi.nih.gov





IASP Publishes Authoritative Work on Sickle Cell Pain

Washington, D.C., March 20, 2014 -- A new book published by the International Association for the Study of Pain will interest researchers and clinicians focused on sickle cell disease. Sickle Cell Pain, Second Edition, by Samir K. Ballas, is a panoramic, in-depth exploration of every scientific, human, and social dimension of this cruel disease. This comprehensive, definitive work is unique in that it is the only book devoted to sickle cell pain, as opposed to general aspects of the disease.

The 752-page book links sickle cell pain to basic, clinical, and translational research, addressing various aspects of sickle pain from molecular biology to the psychosocial aspects of the disease. Supplemented with patient narratives, case studies, and visual art, Sickle Cell Pain’s scientific rigor extends through its discussion of analgesic pharmacology, including abuse-deterrent formulations. The book also addresses in great detail inequities in access to care, stereotyping and stigmatization of patients, the implications of rapidly evolving models of care, and recent legislation and litigation and their consequences.

Samir K. Ballas, MD FACP FASCP DABPM FAAPM, is emeritus professor of medicine and pediatrics at Thomas Jefferson University in Philadelphia and honorary staff member of HEMORIO, the Hematology Institute in Rio de Janeiro. He formerly directed the Adult Sickle Cell Program of the Commonwealth of Pennsylvania for the Philadelphia Region. Dr. Ballas is also a senior member of the Cardeza Foundation for Hematological Research and former director of the Thomas Jefferson University Sickle Cell Center and the University Hospital Blood Bank.

Qualified reviewers may request complimentary review copies in digital format through iaspdesk@iasp-pain.org. The book’s table of contents is available on the IASP website.

The International Association for the Study of Pain brings together scientists, clinicians, health-care providers, and policymakers to stimulate and support the study of pain and to translate that knowledge into improved pain relief worldwide. IASP Press® publishes timely, high-quality, reasonably priced books on a variety of topics related to pain research and treatment. IASP has more than 7,000 members from 133 countries and 90 chapters. For more information, visit www.iasp-pain.org.




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  • Next SCAPN Meeting

    Foundation for Sickle Cell Disease Research Meeting (FSCDR)

    April 10 - 13, 2015 - Hollywood, Florida

    Actual meeting date TBD - This will not be a Symposium Meeting


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