Presentation

 

Since ophthalmologists are the first medical group exposed to potential cases of neuronal ceroid lipofuscinosis, it is especially important to systematically inform this group in order to avoid frequent incorrect diagnoses – mostly retinitis pigmentosa.

 

Archive picture of an NCL patient with clear target-like structuring of the macula.

 

(Source: Prof. K. Rüther, Charité, Berlin)

 

 

 

 

 

 

In order to enable early recognition of the NCL disease and to reduce the rate of incorrect diagnosis, the NCL Foundation targets information at this group of doctors using the following means: 

Above all, the focus here is on initiating internal training within the clinics and publishing and spreading articles in journals.  For example, the scientific paper initiated by the Foundation "Relevance of ophthalmologic diagnostics for looking after patients with juvenile neuronal ceroid lipofuscinosis" (by Prof. K. Rüther et al., 2006 appeared in "Klinische Monatsblätter für Augenheilkunde") was sent to all German and Austrian eye clinics. The clinic directors were asked to integrate this publication in internal training. 

In total 117 eye clinics were approached as to whether they could include the NCL disease in their internal training programmes. Status 04/08: Training was held at 27 (23%) eye hospitals. The NCL Foundation was present at some of these. 31 (26%) eye hospitals were not interested and 59 (51%) did not reply.

Additionally, Dr. Stehr had the opportunity of holding lectures at the eye hospitals of Berlin-Schlosspark, Bonn, Essen, Jena and Zurich with the subject title: "Neuronal ceroid lipofuscinosis – not only an illness of the retina“. He reported to ophthalmologists on the illness of juvenile NCL, its symptoms and its causes and presented the work of the NCL Foundation.

 

You will find the presentation here as a PDF (German version).

In addition to presentations and the initiation of scientific publications, in 2008 the NCL Foundation developed a special NCL information sheet tailored to the needs of the ophthalmologists. The sheet was added free of charge to the congress bags of the annual conference for ophthalmologists (DOG) in Berlin.

The information sheet for ophthalmologists can be found here in PDF (~130KB, German version) format. 

NCL in Europe

The measures of the foundation to create awareness of neuronal ceroid lipofuscinosis among ophthalmologists was extended to Switzerland and Austria.  40 ophthalmic clinics were contacted.

 

 

 

NCL training in eye clinics in Germany, Austria and Switzerland since 2006.

 

 

 

On 29 April 2009 Dr. Frank Stehr had the opportunity of informing 50 ophthalmologists at the eye clinic in Innsbruck in more detail about neuronal ceroid lipofuscinosis.

You will find the presentation here as a PDF (~1.1MB, German version).

 

Journals for ophthalmologists

The topic of “NCL” was successfully featured in the journal „Der Ophthalmologe“ which presents all aspects of ophthalmology. Comprehensive reviews on a current focal topic form the core of every issue.  Last summer NCL appeared as the focal topic. Various doctors have published articles here which illuminate NCL from various angles (including differential diagnostic, genetics, and the role of the neuropaediatrician. The NCL issue appeared in July 2010.

You can find the Foundation’s article here as a PDF (German version).

You will find an article (German version) here by Dr. Krohne and colleagues on juvenile NCL.

 

Differential diagnostic poster

In cooperation with Pro Retina a poster project is being implemented which focuses on differential diagnostic. The poster points out the differential diagnostic of retinitis pigmentosa to which NCL also belongs. This poster will be distributed to all ophthalmic hospitals. This project was presented by Dr. Stehr on 9 June at the ophthalmic doctor’s congress (WOC2010, Berlin).

By now the German version of the differential diagnostic poster is distributed to more than 20 different ophthalmic hospitals in Germany and Austria.

In the following picture you can see Dr. Krohne from the University Eye Hospital Bonn.

 

 

The picture shows Mrs. Jensen from the Asklepios Klinik Altona in Hamburg.

 

 

With friendly support of Dr. Golestani (left) and Dr. Frühwirth (right) the poster was placed in the ophthalmic department at the Donauspital in Vienna/Austria.

 

 

Now there is also an English version of the differential diagnostic poster available. You can see it here.