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Information for SCCRIP Participants

By taking part in SCCRIP, you are a partner in historic research. The details you provide help us better understand the health needs of other patients with sickle cell disease.

With your help, we've been able to learn a lot. But many questions are still unanswered. If you have not completed a study visit and/or questionnaire in the last 5–6 years, please contact us .

The difference you make

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

Increasing understanding of your own health: The details you provide when you answer the study’s questionnaires helps 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 more about some of the study’s achievements.

Study participants

More than 1,300 patients with sickle cell disease are taking part in this study. 

SCCRIP currently enrolls patients from five institutions:

  • St. Jude Children’s Research Hospital, Memphis Tennessee
  • Methodist University Hospital, Memphis, Tennessee
  • Our Lady of the Lake Children’s Hospital, Baton Rouge, Louisiana
  • 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 gathered and completing questionnaires at pre-defined age milestones.

I used to be in the study but I haven't completed the last few study visits and/or questionnaires. 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 very important. We need and value you.

Please be sure to keep your contact information current. Email us to make sure we have your correct contact information, to schedule your next research visit, or to complete the next step of questionnaires.

SCCRIP Data Elements

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

SCCRIP collects standard-of-care clinical data, questionnaire (quality of life and demographic) data, and banks specimens for future genetic studies. 

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

    • Demographics
      Demographics are data collected from a group of people.  Examples include age, race, gender, marital status, income and education level.
    • Complete blood count
      A complete blood count is a test that measures different features of your blood. This test can be used to find things such as infections, anemia, blood cancers and other disorders.
    • Weight, measurements, and vital signs
    • Vaccination dates
    • Transcranial doppler ultrasound
      A transcranial doppler ultrasound is a method used to look at blood circulation within your brain to assess the risk of having a stroke.
    • Echocardiogram
      An echocardiogram (echo) is a test that uses high-frequency sound waves to take pictures of your heart. The test is also called echocardiography or diagnostic cardiac ultrasound.
    • Acute care utilization
      SCCRIP tracks the number of times that you have received “acute” or emergency health care. 
    • Splenectomy
      A splenectomy is an operation where your spleen is removed. The spleen helps your body fight infection and removes old or unneeded material, such as old or damaged blood cells.
    • Health-related quality of life
      The SCCRIP questionnaire will ask you about your day-to-day experience with sickle cell disease and how treatment has affected you.
    • Blood chemistry/Comprehensive Metabolic Panel
      The blood chemistry or Comprehensive Metabolic Panel is a blood test used to learn more about your fluid balance, electrolyte levels and how well your kidneys and liver are working.
    • Hemoglobin fractionation
      Hemoglobin fractionation or hemoglobin electrophoresis is a blood test that measures the types of protein called hemoglobin in your red blood cells.
    • Urinalysis/urine chemistry
      A urinalysis/urine chemistry test is the physical, chemical and microscopic examination of urine. It detects and measures various things that can pass through your urine.
    • Viral serology
      Viral serology testing is used to confirm the presence of a virus or specific antibodies targeted against the virus. Viral serology can be used to screen, diagnose, or monitor infections, as well as to assess immunity, acquired naturally or after vaccination.
    • Endocrinology
      Endocrinology is the study of the endocrine system. This is a system of glands that secrete hormones. Hormones are chemicals that affect the actions of different organ systems in the body. Examples include thyroid hormone, growth hormone and insulin.
    • Pulmonary function test
      Pulmonary function tests are noninvasive tests that show how well the lungs work. The tests measure lung volume, capacity, rates of flow and gas (oxygen and carbon dioxide) exchange.
    • Brain, heart, joint and liver MRIs
      Magnetic resonance imaging (MRI) is a way to take pictures of the inside of your body without using X-rays or radiation. Photos may be taken of your brain, heart, joints (hips and shoulders) or liver.
    • Treatment history
      SCCRIP gathers data on treatments the patient may have received, including medications and other therapies, as a result of sickle cell disease.  
    • Blood transfusions
      A blood transfusion is a routine medical procedure in which donated blood is given you through a narrow tube placed in a vein in the arm. 

Participating Centers

ENROLLING CENTERS 
Institutions Principal Investigators
St. Jude Children’s Research Hospital*       Jane Hankins, MD, MS & Jeremie Estepp, MD§
Methodist Adult Comprehensive Sickle Cell Center (Methodist Le Bonheur Hospital) Kenneth Ataga, MBBS
Children’s Hospital of Illinois at OSF-Saint Francis Medical Center Kay Saving, MD
Novant Health Hemby Children’s Hospital Paulette Bryant, MD
Our Lady of the Lake Regional Medical Center Jeffrey Deyo, MD
COLLABORATING INSTITUTIONS
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, Gary Beasley, MD; Nariman Ammar, PhD; 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
Texas Children’s Hospital Andrew Heitzer, PhD

·        *Coordinating Center 
·        ‡Study Principal Investigator
·        §Study Co-Principal Investigator
·        †Site Principal Investigator

  1. Can being in this study risk my personal information?

    The information you provide is held in the strictest confidence. Every person in the study has been assigned a unique study number. When you submit a survey or biologic specimen, your name and other personal identifiers are removed.

    Protecting your health information is our top priority, but there is a small chance personal information from your records could be accidentally seen by others. To prevent this, only a limited number of study staff have access to your information. No data are ever stored on laptops and only authorized individuals can access the data. Study results are reported on the whole group, never identifying one individual.

    The study has received a Certificate of Confidentiality, which helps us protect the privacy of our research subjects. The certificate protects against the involuntary release of information about subjects collected during our covered studies. The researchers involved in the studies cannot be forced to disclose the identity or any information collected in the study in any legal proceedings at the federal, state or local level regardless of whether they are criminal, administrative or legislative proceedings. Federal funding agencies may review our records under limited circumstances. An example of this might be a Department of Health and Human Services (DHHS) request for information for an audit or program evaluation. Another example might be a Food and Drug Administration (FDA) request under the Food, Drug and Cosmetics Act.