Dr Dohil, who is a Pediatric Gastroenterologist at UC San Diego, is presently conducting a research study with the aim to determine where in the intestine cysteamine (CystagonTM) is absorbed. This information may help create a controlled-release preparation of cysteamine, which can hopefully be taken without the unwanted gastrointestinal side effects.
The cysteamine absorption will be measured from the stomach, the upper small intestine and the upper large intestine. To do this, a very soft tube will be inserted through the nose into the stomach. The tube will remain inserted for five days and during this time it will travel through the intestine as if it were food. On the first, third and fifth day the tip of the tube should be in right positions and cysteamine will be administered through the tube into the different parts of the intestine. After the cysteamine administration, blood samples will be drawn over a 16 hour period to determine the amount of cysteamine absorbed, white blood cell cystine levels and gastrin levels (the hormone that is normally responsible for producing stomach acid and causing gastrointestinal symptoms).
Six patients with cystinosis and nine healthy adults (control patients) have so far participated and the researchers are looking for about six more patients for this study. Volunteers should be 12 years or older and so far not have required a kidney transplant. Travel expenses for the volunteer and one parent to San Diego will be covered and the volunteers will be compensated for participating in this study.
Patients from Europe may be considered if affordable travel can be arranged.
For further information, please contact the study coordinator Meredith Fidler, Phd: