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Information for SCCRIP Participants

By taking part in the Sickle Cell Clinical Research and Intervention Program (SCCRIP), you are a partner in historic research. The details you provide help us better understand the health needs of you and other patients with sickle cell disease.

With the help of our participants, we have been able to learn much. But many questions are still unanswered. If you have not completed a study visit or questionnaire in the last 5–6 years, please email us at

The difference you make

Improve the lives of others: Health information from SCCRIP helps researchers develop new treatments for people with sickle cell disease.

Increase our understanding of your health: The details you provide when you answer the study’s questionnaires help us understand how sickle cell disease may affect your health later in life. This knowledge helps health care providers detect health issues early, before they become a problem.

Learn about the study’s latest results.

Study participants 

More than 1,600 patients with sickle cell disease are taking part in this study.

SCCRIP enrolls patients from 5 institutions:

  • St. Jude Children’s Research Hospital: Memphis, Tennessee
  • Methodist University Hospital: Memphis, Tennessee
  • Regional One Health, Memphis, Tennessee
  • Novant Health Hemby Children’s Hospital: Charlotte, North Carolina
  • OSF Healthcare Children’s Hospital of Illinois: Peoria, Illinois

After enrolling in the study, you and your legal guardian will complete SCCRIP procedures. These include having labs collected and completing questionnaires at pre-defined age milestones.

Am I still in the study?

If you were ever part of the study, you will continue to be in the study until you tell us that you no longer want to take part. Even if you skipped some of the study visits or questionnaires, your health information is still important to our findings. We need and value you.

Please be sure to keep your contact information currentEmail us to:

  • Make sure we have your correct contact information
  • Schedule your next research visit
  • Complete the next set of questionnaires

SCCRIP data elements

SCCRIP will collect data for the rest of your life. The study also gathers your data from birth to the date you enrolled in the study. 

SCCRIP collects:

  • Standard-of-care clinical data
  • Questionnaire (quality of life and demographic) data
  • Specimens for future genetic studies 

You will be asked to complete SCCRIP research visits at certain age milestones. During these visits, bodily fluids such as blood, urine, and saliva may be collected. You will also complete quality of life and demographic questionnaires.

Participating Centers

Institutions Principal Investigators
St. Jude Children’s Research Hospital* Clifford Takemoto, MD and Parul Rai, MD§
Methodist Adult Comprehensive Sickle Cell Center (Methodist Le Bonheur Hospital) Kenneth Ataga, MD 
Children’s Hospital of Illinois at OSF-Saint Francis Medical Center Kay Saving, MD
Novant Health Hemby Children’s Hospital Felipe Bautista Otanez, MD
Regional One Health Kenneth Ataga, MD; Ugochi Ogu, MD§
Institution Sub-investigators
Le Bonheur Children’s Hospital Rima Zahr, DO 
University of Memphis School of Public Health James Gurney, PhD, Matthew Smeltzer, MS 
University of Tennessee Health Science Center Neeraja Yedlapati, MD; Hugo Martinez, MD, Patricia Dubin, MD; Jeffrey Towbin, MD; Jason Goldberg, MD, Kaitlin Ryan, MD, Mohammed Absi, MD; Akram Mohammed, PhD; Mary E. Killian, MD; Robert Bradley, MD
UTHSC-ORNL Center in Biomedical Informatics Robert L. Davis, MD, MPH; Arash Shaban-Nejad, PhD; Oguz Akbilgic, PhD; Eun Kyong Shin, PhD 
University of Alabama at Birmingham School of Medicine Jeffrey D. Lebensburger, MD 
University of Washington Oyebimpe Adesina, MD 
Washington University School of Medicine     Allison King, MD, MPH, PhD 
The Medical College of Wisconsin Amanda Brandow, DO 
Children’s Hospital of Philadelphia
Stella Chou, MD; Babette Zemel, PhD
Vanderbilt University School of Medicine Michael DeBaun, MD, MPH
Regional One Health Diggs-Krause Sickle Cell Center Ugochi Ogu, MD§
*Coordinating Center 
‡Study Principal Investigator
§Study Co-Principal Investigator
†Site Principal Investigator

SCCRIP participant privacy and safety

Contact SCCRIP

If you are not yet in this study but would like to join, email us at

If you take part in SCCRIP, please update your contact information regularly so we can stay connected.

Learn more