Families

• 1: For children
• 2: For adolescents
• 3: For parents
• 4: Children’s rights

1 - For children

In Munich, there’s this place called Dr. von Hauner Children’s Hospital. It’s a special place and hospital for kids who have really serious and long-lasting sicknesses. They’ve been helping out kids since way back in 1846 when a doctor named Dr. August von Hauner started it all.

Nowadays, they’re not just helping out kids from Munich or Bavaria, but from all over Germany and even from different parts of the world! They don’t care where you’re from or what you look like, they just want to help you feel better.

They’re all about giving top-notch care that’s just for kids. And get this—they’re always trying to make things even better! They team up with lots of other hospitals and experts to figure out new and improved ways to treat kids’ sicknesses.

At Dr. von Hauner Children’s Hospital, they really get that kids are super important. They want to make sure everyone respects how kids see the world.

And guess what? They don’t just treat kids—they also learn from them! They think it’s really important for kids to be part of making medicine better. So, they listen to what kids and their families have to say, and they work together to find new ways to help.

They’re even part of this big project called the German Centre for Child and Adolescent Health, where they’re trying to make medicine more personalized and precise, just for kids!

If you’re a kid with a rare disease, the team of Dr. von Hauner Children’s hospital is here to care for you! They’re here to give you hope and try their best to help you feel better, no matter what.

SCIVIAS Study

Hey there! So, at Dr. von Hauner Children’s Hospital, they’re doing this thing called the SCIVIAS study. They’re checking out kids with rare diseases to see if they can find special signs that might show up before they actually get sick.

They use cool machines to take really clear pictures of the back of the kids’ eyes. This helps them see if there’s anything weird going on that could mean they might get a certain kind of sickness.

Then, they look at stuff in the kids’ blood and pee to find clues. It’s like being a detective, but for health stuff! They even have super smart computers helping them out. These computers look at all the information they gather and try to find patterns to help figure out what’s going on.

Of course, they’re super careful with all the info they collect. They make sure it’s all safe and private so nobody else can see it.

The whole point of this is to find out if they can spot these rare diseases early, so they can help kids feel better faster. Cool, right?

AMIGO

Our project “AMIGO: Advanced Medical Intelligence for Guiding Orphan Medicine” is run by Dr. von Hauner Children’s Hospital in Munich. They’re trying to help kids who have really rare diseases, but don’t get a lot of attention in medicine.

When a kid goes to the hospital, they ask a lot of questions and do some tests, like taking blood and pee samples, and looking at their eyes. Then, some smart people called bioinformaticians look at all this information. But even with all these tests, they only figure out what’s wrong about 30% of the time, especially for really rare diseases that mostly come from genes. And for over 95% of these rare diseases, there isn’t even a medicine that’s been tested and approved yet! This makes things really hard for the doctors and the kids and their families.

So, the AMIGO project wants to do something to help. They want to learn more from all this information. And don’t worry, they’re keeping it all safe and private while they do this. They’re using a special way to look at the data without sharing it everywhere.

By putting all this information into something called a “Clinical Knowledge Graph”, scientists and doctors from all over the world can use it to learn and help figure out diseases faster and better. This could help make treatments better and maybe even find new medicines!

And guess what? It’s not just about helping kids. The things they learn could also help grown-ups with problems like heart or brain issues. So, it’s like they’re using information to help everyone stay healthy.

2 - For adolescents

In Munich, there is this place called Dr. von Hauner Children’s Hospital. It’s pretty significant because it specializes in treating kids with serious and long-lasting illnesses. It’s been around since 1846 when Dr. August von Hauner started it all up.

Nowadays, it’s not just serving kids from Munich or Bavaria; it’s drawing patients from all over Germany and even internationally. They’re all about providing top-notch care tailored specifically for kids. And they’re constantly looking for ways to improve their treatments by collaborating with other hospitals and experts.

At Dr. von Hauner Children’s Hospital, they understand the importance of respecting how kids perceive the world. They don’t just treat their patients; they also value their input. They think it’s crucial for kids to be involved in improving medical care.

They’re even part of this big project called the German Centre for Child and Adolescent Health, where they’re working on making medical treatments more personalized and precise, especially for kids.

So, if you’re a teen dealing with a rare illness, this place is here to offer you hope and do everything they can to help you get better.

SCIVIAS Study

Hey, so there’s this really interesting study happening at Dr. von Hauner Children’s Hospital called the SCIVIAS study. They’re focusing on kids with rare diseases to see if they can detect any signs that might show up before they actually get sick.

One thing they’re doing is using advanced machines to take detailed images of the back of the kids’ eyes. This helps them identify any abnormalities that could indicate a specific genetic disease.

They’re also analysing different substances in the kids’ blood and urine to look for clues. It’s kind of like being detectives, but instead of solving crimes, they’re trying to solve health mysteries!

And here’s where it gets really cool—they’re using artificial intelligence (AI) to process all the data they collect. This AI helps them find patterns and correlations in the information, which can lead to better understanding and early detection of diseases.

Of course, they’re taking privacy and security seriously. They make sure all the data is protected and anonymized so that nobody’s personal information is at risk.

Overall, the goal of the SCIVIAS study is to find ways to identify rare diseases early on, so that doctors can provide better treatment and care for kids. It’s pretty fascinating stuff!

AMIGO

So, there’s this project called “AMIGO: Advanced Medical Intelligence for Guiding Orphan Medicine”, run by Dr. von Hauner Children’s Hospital in Munich. They’re trying to help kids with rare diseases, who often get left out in medicine.

When a kid goes to the clinic, they collect a bunch of data about their medical history and symptoms. They use forms, blood and pee tests, and check-ups. They even do things like genome tests and fancy eye scans. Then, smart people called bioinformaticians analyze all this data. But here’s the thing: even with all this info, they only figure out what’s wrong about 30% of the time, especially for rare diseases that are mostly genetic. And for over 95% of rare diseases, there isn’t even a medicine that’s been tested and approved yet! This makes things really tough for the doctors, as well as the kids and their families.

So, the AMIGO project wants to do something about it. They want to get more knowledge from all this data. And they’re keeping it all safe and private while they do this. They’re using this thing called federated machine learning to analyze the data. It’s like they’re using a special tool that lets them analyze data from different hospitals without actually moving the data out of each hospital’s secure system.

By putting all this info into something called a “Clinical Knowledge Graph”, scientists and doctors from all over the world can use it to learn and help diagnose diseases faster and more accurately. This could lead to better treatments and maybe even new medicines!

And here’s the interesting part: it’s not just about helping kids. The stuff they learn could also be used to improve treatments for adults with things like heart or brain problems. So, it’s like they’re using data to help everyone live healthier lives.

3 - For parents

The Children’s Clinic and Children’s Polyclinic at the Dr. von Hauner Children’s Hospital is a reference center for many children with severe, chronic, complex illnesses. We are committed to the legacy of Dr. August von Hauner, who laid the foundation stone in 1846 to help the children of Munich as a “poor doctor”. Today, we not only treat children with acute and chronic illnesses from Munich and Bavaria, but also serve patients from Germany and all over the world—regardless of their ethnic or national origin.

We promote highly specialized, child-oriented and holistic medicine. We are not satisfied with the current state of knowledge, but work together with many regional, national and international partners to develop a new era of personalized precision medicine in the interests of our patients and their families.

Children are our future—but by virtue of being children, children also defy the principles that shape our world today. At Hauner Children’s Hospital, we want to promote respect for the reality of children’s lives.

As a university hospital, we take our academic mission seriously. We can only improve medicine through the rationality of science. Children also have a right to participate in medical progress. Together with our patients and their families, we therefore want to understand the basics of diseases in order to derive new ways of diagnosis, treatment and prevention. The paediatrics of the future will be personalized, predictive and participatory precision medicine - we are working on this as an integral partner in the new German Centre for Child and Adolescent Health.

Children with rare diseases, until now the “orphans of medicine”, can become pioneers of a new era against the backdrop of epochal innovations in the various disciplines of life sciences, biotechnology and data sciences. Our clinic wants to give hope to all those children whose diseases cannot yet be cured!

SCIVIAS Study

The SCIVIAS study at the Dr von Hauner Children’s Hospital focuses on the examination of children with rare diseases in order to identify biomarkers that enable early diagnosis. Various methods are used for this purpose, including imaging of the fundus oculi, OMICS analyses of blood and urine and artificial intelligence methods for data analysis. The aim is to use a simple and painless examination to detect a disease before the child is sick.

Data collection within the SCIVIAS study involves several steps and methods that are carefully carried out in order to obtain accurate and meaningful information.

• Imaging of the fundus oculi: High-resolution images of the back of the eye are taken to identify eye problems that may indicate certain genetic diseases. Modern equipment and technologies are used to obtain precise and detailed images.
• OMICS analyses: This includes various “OMICS” technologies such as genome sequencing, transcriptome analysis, proteome and metabolome analysis. These methods enable the comprehensive analysis of genetic, transcriptional and metabolic profiles of the children. By analysing this data, potential biomarkers that indicate certain diseases can be identified.
• Artificial intelligence (AI) methods: Artificial intelligence methods such as machine learning are used to process the large and complex data sets and identify patterns or biomarkers. These algorithms help to extract relevant information from the data and recognise diagnostic patterns.

The security and processing of data are of crucial importance, particularly in the area of data protection and ethics. The following measures are taken:

• Anonymisation and pseudonymisation: personal identification data is removed or encrypted to ensure patient anonymity.
• Secure data transmission and storage: Secure protocols are used for the transmission and storage of data to ensure its integrity and confidentiality.
• Access control: Access to data is strictly controlled and only granted to authorised persons to prevent misuse or unauthorised disclosure.
• Ethics committees and data protection guidelines: The study will be overseen by ethics committees and clear privacy policies will be established to ensure that the rights and privacy of participants are protected.

Through these careful measures in data collection, processing and security, the SCIVIAS study endeavours to achieve high-quality and ethically acceptable results that can contribute to improving the early detection and treatment of rare diseases in children.

For more Information, please see Scivias Study | Comprehensive Childhood Research Center (ccrc-hauner.de)!

AMIGO

The “AMIGO: Advanced Medical Intelligence for Guiding Orphan Medicine“ project, which was launched and is managed by the Dr. von Hauner Children’s Hospital in Munich, aims to give hope to children with rare diseases, the so-called orphans of medicine.

When a child comes to the clinic, a large amount of data is collected as part of the medical history and diagnosis using standardized questionnaires, blood and urine tests and physical examinations. Genomes, proteomes, metabolomes or (as in the SCIVIAS study) OCT images are recorded. The data is processed and analyzed by our bioinformaticians. In most cases, this leads to a diagnosis. However, if the child suffers from a rare disease, we only find a cause for the disease in 30% of cases. This is usually of genetic origin. For more than 95% of rare diseases, there is no tested and approved medication. This poses huge challenges for our medical staff, as well as the children and their families. Although progress in medicine is advancing rapidly, it is impossible for clinicians to learn, analyze and incorporate the latest findings into diagnostics and treatment on a daily basis.

The AMIGO project should make it possible to generate more knowledge from the data. We want to use the information that the data gives us. At the same time, data protection should be safeguarded during this process. Federated machine learning (ML) opens up this possibility for us.

The decentralized approach allows us to keep the data securely in the clinic. This means that it is not issued or stored on cloud servers. The bioinformaticians at Dr. von Hauner Children’s Hospital pre-process the data. The FeatureCloud tool used enables data protection-compliant analysis of multi-institutional data. This means that the information (e.g. “Encoded child 1 has proteome values XY and metabolome values AB”) is read and processed.

By feeding our information into a so-called “Clinical Knowledge Graph”, scientists and doctors all over the world can benefit from this knowledge. Ideally, they will use the same technology and thus continuously expand the graph. The result is a network that always provides doctors with the latest information. This means that the data information can be used to make diagnoses more quickly and correctly. This opens up the possibility of targeted therapy and, in a broader sense, drug development.

However, it is not only pediatric medicine that can be raised to a new level by analyzing the data. The knowledge gained can also be used in adult medicine and thus support the prevention and treatment of cardiovascular or neurological diseases, for example.

4 - Children’s rights

All children and young people have rights. They were laid down by the United Nations in 1989 in the UN Convention on the Rights of the Child (UNCRC: Convention on the Rights of the Child | UNICEF). All countries in the world (with the exception of the USA) have undertaken to respect and implement children’s rights in their country and to monitor their implementation. The UN Convention on the Rights of the Child defines rights to protection, promotion and participation and states that the best interests of the child must always be the primary consideration. The UN Convention on the Rights of the Child is not only important for the healthcare system because of the right to the highest attainable standard of health and the best possible medical treatment.

The Dr. von Hauner Children’s Hospital respects the rights of sick children and adolescent patients and at the same time recognizes that overriding structural requirements still stand in the way of comprehensive implementation of the principles of the UN Convention on the Rights of the Child. This charter is based on the charters of renowned international children’s hospitals (Boston Children’s Hospital, SickKids Toronto, Hôpital Necker-Enfants Malades Paris, Great Ormond Street Children’s Hospital London) and the Charter on the Rights of Children in Hospital drawn up by the European Association for Children in Hospital. The Hauner Charta helps to strengthen the rights of sick children and adolescent patients and to better implement them in everyday clinical practice.