Dr. Schneider and Fidler Seeking Volunteers

Blood Sample Preparation for White Blood Cell Cystine Levels

Dr. Jerry A. Schneider and his team at the University of California San Diego are conducting a research study to learn more about how to prepare the blood samples used for the determination of white blood cell cystine levels.

For this study, they are looking for cystinosis patients (12 years and older) who would travel to San Diego for this study. Flight cost will be paid for. Preference will be given to patients 18 years and older, who can fly to San Diego and back home on the same day. Patients do not have to currently be taking Cystagon. However, patients have to be able to provide recent laboratory test showing that their red blood cell count is not below normal.

White blood cell cystine levels need to be measured occasionally to be certain patients are taking the correct dose of Cystagon. When we started to study cysteamine many years ago we tried to find a way to have whole blood shipped to our laboratory so that we could both prepare the white blood cells and measure the cystine. We couldn’t make this work. We only got reliable results if the white blood cells were made promptly after the blood was drawn.

Although preparing the white blood cells is not very difficult, it is very time consuming and labs often find the preparation challenging, especially if a lab only does this every few months. We have some ideas of how we might stabilize the white blood cells so that the blood could be shipped and our laboratory could prepare the white blood cells. To test these ideas we need some cystinosis patients who are willing to donate blood. Patients volunteering for this study will be asked to come to the UCSD (University of California, San Diego) Medical Center in San Diego where a blood sample will be taken. Depending on the age and blood count of the patient, up to 10 tablespoons of blood will be taken (150 mL). A “unit” of blood that is taken at a blood bank is three times as much (450 mL). Of course smaller patients will have less blood taken. Patients may be asked to not take Cystagon for 24 hours before the blood draw. Participating in research is entirely voluntary. If you are interested in participating and would like more information, please contact the University of California, 200 West Arbor Drive, MC 8450 San Diego, CA 92103-8450.  Phone:  619-543 2049.

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