• Research and Resources for Collaboration

  • Network with Adult Sickle Cell Providers

  • Patient Care Resources

  • 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.


 Adults with sickle cell disease cured with stem cell transplant


UIC physicians have cured 12 adult patients of sickle cell disease using stem cell transplantation from healthy, tissue-matched siblings.

The transplants at UI Health were the first performed outside the National Institutes of Health campus in Maryland, where the procedure was developed.

Because the technique eliminates the need for chemotherapy to prepare the patient to receive the transplanted cells, it offers the prospect of a cure for tens of thousands of adults with sickle cell disease.

About 90 percent of the approximately 450 patients who have received stem cell transplants for sickle cell disease have been children. Chemotherapy was considered too risky for adult patients, who are often more weakened than children by the disease.

“Adults with sickle cell disease are now living on average until about age 50 with blood transfusions and drugs to help with pain crises, but their quality of life can be very low,” says Damiano Rondelli, chief of hematology/oncology and director of the blood and marrow transplant program at UI Health.

“Now, with this chemotherapy-free transplant, we are curing adults with sickle cell disease, and we see that their quality of life improves vastly within just one month of the transplant,” said Rondelli, Michael Reese professor of hematology in the College of Medicine. “They are able to go back to school, go back to work, and can experience life without pain.”


‘Achilles’ heel’ of sickle cell disease? Gene-editing study reveals pathway that could help short circuit blood disorder


Researchers from Dana-Farber/Boston Children’s Cancer and Blood Disorders Center have found that changes to a small stretch of DNA may circumvent the genetic defect behind sickle cell disease. The discovery, outlined today in the journal Nature, opens a promising path for developing gene-editing approaches to treat the disease and other hemoglobin disorders.

This stretch of DNA, called an enhancer, controls a molecular switch that determines whether a red blood cell produces the adult form of hemoglobin — which in sickle cell disease is mutated — or a fetal form that is unaffected by and counteracts the effects of the mutation. Other studies have indicated that sickle-cell patients with elevated levels of fetal hemoglobin have a milder form of the disease.

The new study was led by Stuart Orkin of Dana-Farber/Boston Children’s, who is also David G. Nathan Professor of Pediatrics at Harvard Medical School (HMS); Daniel Bauer, also of Dana-Farber/Boston Children’s and an assistant professor of pediatrics at HMS; and Feng Zhang of the Broad Institute of MIT and Harvard. The research was spurred by the discovery that naturally occurring beneficial variations in the DNA sequence in this enhancer dial down the molecular switch only in red blood cells.

To mimic and improve upon the effects of these variations, the research team used recently developed gene-editing tools to cut out tiny sections of DNA step by step along the entire length of the enhancer in blood stem cells from human donors. The researchers allowed the cells to mature into red blood cells and found that the amount of fetal hemoglobin the cells produced had increased substantially.

The team’s experiments revealed a specific location in the enhancer that, when cut, leads to production of high levels of fetal hemoglobin. Parallel experiments in an animal model revealed that removal of this part of the enhancer affected the molecular switch’s expression only in red blood cells, not in immune or brain cells, where the switch is also active. These findings show that the effects are restricted to red blood cells, and that other cell types are unaffected.


New Video Resource

The Mental Health Channel. http://mentalhealthchannel.tv/episode/above-the-crisis

Above the Crisis


From Sickle Cell News September 2015 - A Platt (Emory)




Dear Colleagues: 
We need your help in getting the word out!  The National Heart, Lung, and Blood Institute (NHLBI), part of the National Institutes of Health, would like to make your faculty and undergraduate students aware of an exciting opportunity launched on Challenge.gov, titled, “Novel, Innovative Tools to Increase Public Awareness and Knowledge of Sickle Cell Disease Undergraduate Challenge.”  The Challenge seeks to raise awareness about sickle cell disease (SCD) and its associated complications and to improve the use of effective treatments in real world settings. Entries must be submitted by March 7, 2016 11:59 pm PDT.
This Challenge is open to any “Student Team”, defined as a group of 3-5 individuals each of whom is at least 18 years of age and currently enrolled as a full-time student pursuing a bachelor’s  or associates degree. The team must have a mentor who holds a position as a Professor, Associate Professor, Assistant Professor, Instructor, or Teaching Assistant within the same Academic Institution as the Student Team. 
The NHLBI may select up to three winners to receive a monetary prize. The winning Student Teams may receive reimbursement for eligible expenses to register and travel to the annual NHLBI/National Sickle Cell Disease meeting to present and demonstrate their winning entries.    
For participation information visit the www.challenge.gov  website. Information can also be found on the NHLBI website.
We look forward to many exciting and innovative ideas from your students! Please do not hesitate to contact us with any questions.  
Helena O. Mishoe, Ph.D., MPH
Associate Director for Research Training and Diversity
National Heart, Lung, and Blood Institute
6701 Rockledge Drive, Suite 9093
Bethesda, MD 20892
Phone:(301) 451-5081
Email: mishoeh@nhlbi.nih.gov
Joylene I. John-Sowah, M.D., M.P.H.
Medical Officer, Preventive Medicine
Center for Translation Research and Implementation Science
National Heart, Lung, and Blood Institute
Bethesda, MD 20892 
Phone: (301) 496-1051
Email: johnsowahj@mail.nih.gov














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  • Next SCAPN Meeting

    American Society of Hematology

    57th ASH Meeting and Exposition

    Orlando, Florida

    SCAPN Dinner Meeting

    Monday, December 7, 2015

    8:00p - 10:00p

    Rosen Centre Hotel

    9840 Inverness Drive

    Orlando, Florida 32819


    Dinner is complimentary











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    We are excited to launch our new website!  A big thank you to the Doris Duke Foundation.  We are currently working to create a 501(c)3 organization that facilitates Research, Networking and Resources for Health Care Providers of Sickle Cell Adults!  We welcome you to visit the site and become interactive with us.

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