International Registry of Fetal Anomalies

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Terry DuBose: "We’re at the 44^th Annual AIUM Conference in San Francisco, and we have Dr. Shraga Rottem here who’s been working on something called IRONFAN - the International Registry of Fetal Anomalies, and I’m going to ask him to tell us about this."

Dr. Shraga Rottem: “It’s my pleasure being with OBGYN.net’s Ultrasound section.  IRONFAN is a registry collecting the natural history of fetal anomalies by ultrasound and actually, they have collected 1,500 fetal anomalies detected between 8-16 weeks of gestation.  What we’ve managed to do is to know the natural history of 200 different types of fetal anomalies, which means we’ll be able to tell patients and the people doing the sonogram three things.  What will be the earliest time to schedule a fetal sonogram in a patient where there is an anomaly?  What would be the association to expect at the gestational age and later on in gestation? Also we’ll be able give more indications regarding the transabdominal sonogram which we believe it will still be a must in each and every patient even if we have the first endovaginal sonogram.   Then we’ll be able to do a scheduling of the sonogram showing the gestation in a much more rational way than the way that it is done today, which is a time oriented sonogram.”

Terry DuBose, M.S.: "So as I understand it, you’re gathering cases from all over the world."

Dr. Shraga Rottem: “Yes, we gather cases from exactly fifty centers around the world.  I’d like to mention one of the many of the pioneers like Dr. Bronshtein, Dr. Nicholides, Dr. Ilan E. Timor-Tritsch, Dr. Van Brook, it’s an impressive data base that can tell you straight away today first of all when to schedule the first sonogram for the detection of a given fetal anomaly.  We will expand the study from 16-40 weeks and the most important thing right now is that the people performing the sonogram are continuing filling the registry as the cases are detected so that later on we can go into a network environment.”

Terry DuBose, M.S.: "You need the rare cases?"

Dr. Shraga Rottem: "No I would say each and every case is important. Let’s say we have right now 27 cases for cleft lip detected before 15 weeks, each and every new case coming in we’re getting more associations and more significance to the study. Therefore, each and every case is important until we’re able to put the database on the Internet. In that type of environment people can gather experience from everybody else around the world and judge the needs in performing special tests in a special case according to the experience in the network environment."

Terry DuBose, M.S.: "Sounds very interesting. If a sonographer or sonologist had a case, how would they get it to you?"

Dr. Shraga Rottem: "I think that right now until they’re on the Internet, they should send an email to eduscan@aol.com  and we’ll fax or email the format of the question, it’s a very simple questionnaire. We consider this a very generous service so each and every case coming in we’ll give a free subscription to access the network of the database in making the decision on the next cases that will be."

Terry DuBose, M.S.: "So that would be at eduscan@aol.com" 

Dr. Shraga Rottem: "Exactly."

Terry DuBose, M.S.: "Good, thank you Dr. Rottem."

Dr. Shraga Rottem: "My pleasure."