SQUID PROGRAM

SQUID PROGRAM

This information is from the Cooley's Anemia Foundation website. Though it discusses Thalassemia, it contains information that also pertain to those affected by Diamond Blackfan Anemia. You may want to contact the person listed below to see if those with DBA would also be elgible for their program since those with DBA and on a regular transfusion schedule also have to worry about thier iron content levels. ------------------------------------------------------------------------------------------------------------------------------------------- As all thalassemia patients know, maintaining an accurate measurement of their iron content is vitally important to their future health. Serum ferritin tests are a common – and invaluable – method of measuring “general” iron levels, but they are not sufficiently accurate when it comes to assessing the actual organ storage of iron. For years, the most accurate method of measuring organ iron levels was the liver biopsy, an invasive and inconvenient procedure in which a small piece of liver tissue is removed for examination. Despite the fact that many doctors recommend regular biopsies – as often as once per year – many thalassemia patients are reluctant to undergo the procedure, which sometimes requires a short hospital stay. Now, however, there’s an easier, noninvasive alternative – one which thalassemia patients can take advantage of in 2002. This alternative – called SQUID (for Superconducting Quantum Interference Device) – determines liver iron content by measuring magnetic fields. The experience is much less inconvenient than a biopsy – roughly comparable to undergoing a CAT scan or MRI. The SQUID technology, which the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) has been instrumental in funding, is currently available only at Columbia Presbyterian Medical Center in New York City, although Children’s Hospital Oakland is making arrangements to obtain a machine in the near future. CAF has made arrangements with Columbia Presbyterian – and with Children’ s Hospital Oakland when it obtains its machine – for thalassemia patients to have access to the SQUID for free iron measurements. Patients who wish to participate must be at least 5 years of age and able to lie quietly during the ten- minute procedure. Patients with pacemakers, artificial joints, metal staples or indwelling catheters are not eligible. Patients with dental braces would need to have them removed prior to the procedure. If you are a thalassemia patient and wish to participate, please get permission from your doctor and then contact Eileen Scott at 800-522-7222.