Please Register Here

Registration can be a good thing. In the UK, “Registered Nurse” (RN) is a highly-esteemed title signalling that the bearer has passed a national licensing examination to guarantee a very high standard of qualification. Junior doctors at the beginning of their training, who are taught by their peers to be in complete awe of “RNs”, tend to believe that the meaning is actually “Royal Nurse”–such is their reputation. Whereas the British do register their nurses, they do not register their citizens. If they are not applying to vote or to obtain a passport in the case overseas travel is intended, Her Majesty does not have a clue where her individual subjects are living. All are united in death, however, because the Personal Demographics Service (PDS), the national electronic database of the NHS (National Health Service) collects patients' demographic details. As the event of a person's death requires the involvement of a medical doctor, it is dutifully recorded, even if this is sometimes the first official hint that somebody has existed–or ceased to exist in that case. So the British at least know about the ultimate follow-up.

In other countries, such as Germany for instance, people are constantly registered somewhere. They cannot move from one location to another without registering with their local citizens' bureau within a given time span, ID-cards are obligatory and must be regularly updated, renewed, and paid for. For the ownership of realty, cars, TV sets and radios, mandatory registries exist. Bureaucracy rules and countless civil servants are provided with secure employment. The problem with “over-registration” is that people tend to become wary of it, do not want to become too “transparent”. Doctors have to enter so many data into various obligatory databases that there is little time left to check if those are correct at all, because this would mean actually examining the patient.

When the German Society for Thoracic and Cardiovascular Surgery (DGTHG) and the German Cardiac Society (DGK) came along with their German Aortic Valve Registry (GARY, website: http://www.aortenklappenregister.de/), the initial enthusiasm of the surgeons and cardiologists concerned therefore was a bit limited. Everybody at once agreed that this was a good thing to have - as long as one did not need to actively deal with it too much. In this issue you will find two major articles looking into the rationale for and the importance of GARY [1,2]. Whereas the registry could not be made compulsory for legal reasons, it should go without saying that everybody fiddling around with a patient's aortic valve should enter the relevant data. The new techniques of transcatheter aortic valve implantation (TAVI) have suddenly opened up new indications for interventions the eventual outcome of which remains unknown yet. In order to be able to draw valid comparisons and conclusions, it is mandatory that most, ideally all patients who have an aortic valve implanted become centrally registered and followed. GARY is a tremendous effort by two scientific societies working together in an almost unprecedented way. The US-American societies are even eyeing it enviously, currently striving to establish something similar themselves–with the help of German expertise. All major scientific journals, including this one, are looking forward to getting the results out of this huge database, which should eventually be able to determine valid recommendations for individualized aortic valve therapies. The ThCVS actively encourages the participation in GARY. Every dataset counts.

So every time a German specialist is about to treat a patient with aortic valve stenosis, he should remember this very pleasant last convention in sunny Florida, where he was only too eager to follow the prompt to “Register Here”.

• References

• 1 Doebler K, Boukamp K, Mayer E-D. Indication and Structures and Management of Transcatheter Aortic Valve Implantation: A Review of the Literature. Thorac Cardiovasc Surg 2012; 60: 309-318
• 2 Beckmann A, Hamm C, Figulla HR , et al. The German Aortic Valve Registry (GARY): A nationwide registry for patients undergoing invasive therapy for severe aortic valve stenosis. Thorac Cardiovasc Surg 2012; 60: 319-325