Children and Adolescents

Data and Facts
Thanks to the successful fighting of infectious diseases and advances in prenatal and infant medicine, the number of deaths among children and adolescents has been drastically reduced in the last 100 years. The mortality among infants declined from about 21 percent to 0.5 percent and among children between one and fifteen years of age from one percent to 0.02 percent. But the all clear has not been sounded – the spectrum of children's diseases has changed. Chronic diseases (cancer, diabetes mellitus, asthma, allergies) are on the rise among children and adolescents. Current studies indicate that the general health of children has worsened overall. Behavior that is hazardous to health (such as improper nutrition, insufficient mobility, drugs) and influencing factors are seen as the causes. These have a negative impact on physical health, educational development, conflict resolution and health-related behaviors. Measures to improve health care among children and adolescents are extremely important from the perspective of health policy as well as economics. Many health problems that do not appear until adulthood were already casued during younger years. For this reason, the Federal Ministry for Education and Research (BMBF) considers this an extremely important topic. Within the framework of the Health Research Programme project on the health of children and adolescents, the BMBF supports numerous areas of research focus. A total of about ten million EURO is spent on this every year. Here are a few examples:

National Health Survey of Children and Adolescents
The information currently available on the health of children and adolescents in Germany is insufficient and does not allow for comparable statements at the national level. The goal of the survey of children and adolescents is therefore to obtain representative data on the health condition of the population under the age of 18. To accomplish this, a workgroup of the Robert Koch Institute is studying over 17,000 children aged from 0 to 18 years and surveying their parents. The range of topics includes chronic and acute diseases, mental health, allergies, nutrition and eating disorders as well as quality of life and social conditions. The process and methodology of the primary phase of the survey that was begun in May 2003 are based on the results of the pilot phase (pretest) successfully completed in 2002, which was funded by the BMBF with 800,000 EURO. The implementation of the main phase of the study has been made possible by a concerted action of several ministries. The core survey will be financed jointly by the BMBF and the Federal Minstry of Health (BMG) with 4.15 million EURO over four years. The BMBF is participating in this with 1.6 million EURO for research-related areas. Together with the Federal Ministry for the Environment, Conservation and Reactor Safety (BMU), the BMBF is also funding a supplemental survey on the influences of certain environmental factors on children's health, the children's environment survey. The BMBF supports this study with one million EURO.The first analysis of the data is expected at the start of 2007, and the results will be used to identify health risks and form a basis for direct measures to maintain the health of children and prevent diseases. The data will also serve as an important basis for further research in this area.

Additional information: http://www.kiggs.de/

Clinical Studies with Children
Sick children have a right to treatment with medications for which the dosage, effectiveness and side effects have been systematically investigated. However, the majority of medications that are regularly given to children have not been tested and officially approved for this special age group (off label use). It is typical to transfer the results collected in adults onto children. However, due to differences in metabolism and body structure of children compared with adults, this practice does not ensure that children are being treated according to the current level of medical knowledge and with the minimum possible risk of side effects. From 2002 to 2005, the BMBF is funding the "Pediatric Network on Medication Development and Testing in Children and Adolescents at KKS" (PAED-Net) with a total of 2.8 million EURO. The institutions of PAED-Net at the university clinics of Freiburg, Heidelberg, Cologne , Leipzig, Mainz and Münster are working together with cooperation partners such as doctors' practices and community clinics to perform ethically responsible and professionally qualified tests of medications on children. The "Clonidin study" serves as a multi-centric model study for the performance of a study on pain treatment in newborns in intensive care (study direction: Professor Dr. Bernhard Roth, Cologne).

Additional information:
http://www.kks-info.de/
http://www.paed-net.org/

Addiction Research
Abuse and dependence on legal drugs is widespread today and the effects on health are frequently underestimated. The smoking of tobacco is considered worldwide to the be greatest avoidable health risk. In Germany, approximately 100,000 deaths every year are associated with smoking tobacco. The economic costs of smoking resulting from the disease and early death are estimated at approximately 34 billion EURO per year. Most of those affected are not advised and treated in university clinics but in doctors' practices, regular care clinics or drug counseling centres. However, the development of new diagnosis and therapy procedures for addiction is largely undertaken in university research institutions. In front of this backdrop, the BMBF currently supports four consortia on addiction research in close relation to care that are comprised of university research groups as well as treatment institutions. The projects are involved in prevention and early detection as well as improved treatment of addicts and avoiding relapses. In this way, the connection between patient care and research is strengthened and the transfer of research into practice improved. The consortia are being funded for a period of six years with over 18 million EURO.

Pediatric Oncology Competence Network
After accidents, cancer represents the second most common cause of death among children and adolescents in Germany. In the last two decades, it has been possible to improve the recovery rates to 75 percent – thanks in particular to therapy optimisation studies. This puts Germany in a leading position in the world for successful treatment. Through the creation of the Pediatric Oncology Competence Network, the diagnostics and therapy should be improved, the recovery rates increased further and the quality of life among children with cancer improved. This will be accomplished through optimised cooperation between clinics and research institutions and through innovative basic research projects (on therapy improvements, risk factor determination, therapy innovation, therapy standardisation, post-therapy care, measurement of quality of life and streamlining of the work). The competence network is funded from 1999 to 2004 with about 11.9 million EURO.
Additional information: http://www.kompetenznetze-medizin.de/eng/_html/_ie/_start_ie.htm

Networks for Rare Diseases
Rare diseases are a heterogenous group of approx. 7,000 very different disease forms that are most frequently caused by genetic errors and can therefore also be passed to descendents. But considered together, they are certainly not a rare phenomenon. In Germany, for instance, it is estimated that four million people are affected by these diseases. The illnesses are frequently severe and require expensive treatment and care. They are a heavy burden on the patients and their families and often lead to early death during childhood or adolescence. An example of the research in the area of rare diseases is the network for epidermolysis bullosa (EB). Epidermolysis bullosa refers to a group of genetic skin diseases in which even minimal injuries, abrasions or pressure lead to skin blisters and wounds. Simple actions such as washing, walking and picking up objects can be problematic and painful for sufferers of this condition. The disease is usually already present at birth but can also occur later during the first years of life. EB cannot currently be cured. It is only possible to treat the wounds and alleviate some of the consequences of the illness. A curative therapy is therefore urgently needed for EB. The EB network is concerned with the causes, diagnosis and prevention as well as the development of new treatment options for EB. An understanding of the disease is the prerequisite for developing molecular treatment options and, in particular, gene therapy approaches. In total, the BMBF is funding ten such disease-specific networks on rare diseases. The goal of the funding measure is to integrate national capacities in research and care in order to establish the prerequisites for specific diagnosis, systematic research, optimal information transfer and competent patient care. The networks are being financed for an initial three years, starting in 2003. After this period, the funding may be continued for an additional two years in the event of a positive intermediate evaluation. The total amount of funding for 2003 to 2006 is 14 million EURO.

Rare diseases – networks concerned with diseases among children and adolescents
• Ichthyosis and Related Keratinization Disorders
• Epidermolysis bullosa
• German Skeletal Dysplasia Network (SkelNet)
• Disorders of somatosexual differentiation and intersexuality
• Congenital Bone Marrow Failure Syndromes
• Network for Genetic Metabolic Diseases Detectable by Newborn Screening (METABNET)
• Muscular dystrophyies (MD-Net)
• German Network of Hereditary Movement disorders (GeNeMove)
• Leukodystrophy

Additional information: Research of the BMBF on rare diseases

Overweightness and Eating Disorders in Children and Adolescents – The Molecular Causes
The number of, in some cases, extremely overweight children and adolescents in Germany has increased rapidly for many years. Being overweight is a decisive risk factor for later cardiovascular problems, diabetes and other serious diseases of civilisation. In addition to insufficient mobility and improper nutrition, genetic inheritance can be up to 60 percent responsible for someone becoming overweight. This applies in particular to people who have serious weight problems already during childhood. Multiple genes that influence weight have already been identified. Some cause overweightness, others keep people slim. Researchers working with Professor Johannes Hebebrand in Marburg found mutations in the MC4R gene in two percent of extremely overweight people. This gene provides the blueprint for the melanocortin-4 receptor (MC4R), which is active in a special brain structure, the hypothalamus, in controlling appetite and body activity and therefore body weight as well. However, scientists believe that other, still unidentified genes must also participate in the complicated regulation of body weight. Their research is supported by the BMBF within the framework of National Genome Research Network (NGFN) with a total of five million EURO.

Additional information: http://www.rzpd.de/ngfn_en/index.html

Airway Infections in Children
Acute airway infections in children such as bronchitis or pneumonia, also referred to as acute respiratory infections (ARI), are responsible for numerous doctors' visits and hospital admissions. It is also being discussed whether asthma may be a late consequence of an infection. The Infectious Disease Epidemiology Research Network PID-ARI.Net (Pediatric Infectious Diseases – Acute Respiratory Tract Infections Network) has therefore established the goal of researching the distribution and frequency of acute respiratory infections in children up to 16 years of age with modern investigative procedures. The data collected should be used in future research projects to enable the development of new preventive strategies and better treatment methods. PID-ARI. Net has been funded by the BMBF since 1999 with the goal of strengthening the capabilities of infectious disease epidemiology research in Germany and building a bridge between research and the health care system. The BMBF is providing 3.7 million EURO for this up to 2005.

Additional information: http://www.pid-ari.net/