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Arduous paths for sick children with rare diseases - New challenges for paediatric and adolescent medicine

(Vienna, 16th September 2014) The path from the right diagnosis to effective treatment can be long and arduous, especially for children. Particularly so in rare diseases, the "patient’s path" often turns into an ordeal. Paediatric and adolescent medicine is facing increasing challenges to achieve progress and relief in this area. This was emphasised by both Arnold Pollak and Ulrike Salzer-Muhar of the University Department of Paediatrics and Adolescent Medicine at the MedUni Vienna as well as Reinhold Kerbl, President of the Austrian Society for Paediatrics and Adolescent Medicine (ÖGKJ), today, Tuesday, at a press conference on the occasion of the annual conference of the ÖGKJ from 17 to 19 September in Vienna.

"Particularly with rare diseases, those affected have to travel lengthy paths, often with detours as well, from diagnosis to treatment and possibly follow-up check-ups too," depicts Arnold Pollak, Head of the University Department of Paediatrics and Adolescent Medicine at the MedUni Vienna. The MedUni Vienna has made the subject of "rare diseases" a main area of focus with the establishing of CERUD (the Center for Rare and Undiagnosed Diseases) amongst other measures. "If we analyse these patient pathways, we can find starting points for effecting an improvement and can make the situation of young patients easier.

“Hardly any medical discipline is developing at such a rapid pace as paediatric and adolescent medicine. "Medical knowledge in this field doubles every three to four years, and there are new findings daily, particularly in the area of genetics. These lead to the possibility of many diseases of childhood and adolescence being treated in a "tailored" way today," reports ÖGKJ president Reinhold Kerbl.

When children already need medication…
The fact that medications needed by children and adolescents have often not been tested for this age group led to the founding of the OKIDS medication research network in Austria in 2012. In collaboration with the pharmaceutical manufacturers, this institution organises clinical studies placing the greatest emphasis on patient safety and ethical considerations. As well as the checking of new substances, the use of established medications is also looked at in order to provide Austria’s children and adolescents with the best possible pharmaceutical safety. At present the ÖGKJ is working on the creation of a database listing paediatric medications, showing their availability, recommending adequate dosages and detailing possible risks.

Vaccinations – more topical than ever before
The current Ebola outbreak in some African countries dramatically shows how diseases can quickly spread perilously. There is no doubt that such a possibility could also exist with other infectious diseases (such as, for example, polio). Complete vaccination offering protection over as wide an area as possible is therefore more topical than ever before. The HPV vaccination recently decided on by the health ministry and the recommendation of the vaccination against meningococcal B are sensible measures seen from the ÖGKJ’s standpoint. It is particularly welcome that a vaccine against influenza, which is administered via the nasal mucous membranes and therefore painless, will also be available from autumn 2014. It is to be hoped that the acceptance of the influenza vaccination will be raised through this and that severe cases of the infection can be prevented.

Prevention in childhood – so that healthy children turn into healthy adults
Whilst paediatric care in Austria has reached a very high standard, prevention in childhood and adolescence continues to be at an unsatisfactory level. At present only about two percent of the spending on health is invested in preventive measures. From the ÖGKJ’s point of view therefore more funds should be made available for prevention, in particular in the areas of accident prevention, obesity prevention, addiction prevention, but also for psychological and social health."
In the ÖGKJ’s view, it is particularly pleasing that Sabine Oberhauser, a former paediatrician, has been appointed to this responsible position. We are assuming that the new Minister of Health will bring a lot of understanding for the needs of children and adolescents to bear and that, whilst she is in office, further improvements will be possible," hopes Reinhold Kerbl, "we acknowledge with delight the new minister’s declaration of intent "healthy adults from healthy children" – it is also in line with our own mission statement."

Training and further education
The curriculum reform of the medical degree also affects the training of future paediatricians. This is why there will be a round table discussion on paediatric teaching in Austria within the framework of the conference, to which are invited the respective heads of, or those responsible for, paediatric teaching at the now five medical universities in Austria. "The aim is to harmonise the teaching content," explains Ulrike Salzer-Muhar, Head of Core Unit Teaching at the University Department of Paediatrics and Adolescent Medicine at the MedUni Vienna, "in particular, the weighting of the teaching content of the Austrian curriculum in order to impart to our students what is relevant for paediatrics."