Information for SCCRIP Participants

We collect the following information from those taking part in the study:

• Demographics
  Demographics are data collected from a group of people. Examples include age, race, gender, marital status, income, and education level.
• Complete blood counts
  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 ultrasounds
  A transcranial doppler ultrasound is a method used to look at how blood moves within your brain. This procedure helps assess your stroke risk.
• Echocardiograms
  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.
• Health care services used
  SCCRIP tracks the number of times that you have received “acute” or emergency health care and hospitalizations. 
• Splenectomy
  A splenectomy is an operation to remove the spleen. 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. It can also assess immunity (how well your body fights infection).
• 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 tests
  Pulmonary function tests 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. MRI scans may be taken of your brain, heart, joints (hips and shoulders), or liver.
• Treatment history
  SCCRIP gathers data on treatments you may have received, including medicines and other therapies related to sickle cell disease.
• Blood transfusions
  A blood transfusion is a routine medical procedure. Donated blood is given to you through a narrow tube placed in an arm vein. 

You might not have all of this information in your health history, and that is OK.

The information you provide is kept private. 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. There is a small chance personal information from your records could be seen by others accidentally. To prevent this, only a limited number of study staff are authorized access to your information. No data are ever stored on laptops. Study results are reported on the whole group, never identifying 1 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 participant 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.