Symposium with CSG eV: Cluster Headache Competence Center

A center of excellence pools experience and knowledge.
A key indicator of a high-performing and modern healthcare system is the rapid relief of suffering and pain, sparing patients a long and frustrating search for answers, diagnostic delays, and ineffective therapies. Severe and rare diseases, in particular, manifest with complex symptoms, have multi-causal mechanisms, and present with diverse physical and psychological effects. Therefore, they generally cannot be treated comprehensively and at every location using state-of-the-art specialized care. Without knowledge of current diagnostic criteria, the pooling of experience through specialization, and the implementation of current, scientifically validated treatment pathways, misdiagnoses and ineffective treatment courses can easily occur.
To make current knowledge highly specialized and readily available for patient care, the concentration of experience and knowledge in specialized centers of excellence is essential. Specialized centers of excellence can also provide interdisciplinary care for rare headache disorders at the current scientific level and develop and evaluate targeted new treatment options.
Although cluster headaches and other trigeminal autonomic cephalalgias are rare headache disorders compared to more common migraines and tension headaches, a large number of people across Germany suffer from this severe pain condition. In Germany alone, it is estimated that around 80,000 people suffer from cluster headaches for extended periods, often many decades, of their lives.

Coordinating Communication and Expertise:
In recent years, the dedicated initiatives of the nationwide German Association of Cluster Headache Self-Help Groups (CSG e.V.), in collaboration with clinical and scientific experts, have led to significant improvements in the care of those affected. Cluster headache self-help groups keep each other informed about the latest research findings, are highly specialized in the latest research results, and share this knowledge directly at regional and national meetings and online. The practical implementation of therapeutic options, both in terms of medication and prevention, can be discussed and optimized. Particularly in a field of medicine where randomized controlled trials are difficult to access due to the rarity of the disease, this can provide new insights into the effectiveness and tolerability of treatment methods.
Thanks to online information resources, those affected can now often learn about the condition for the first time by reading descriptions from others, make a diagnosis themselves, and compare it with their own symptoms. The German Federal Association of Cluster Headache Self-Help Groups has thus provided an exemplary demonstration of how those affected can actively intervene in the medical care of rare diseases and help organize a significantly better, more effective, and also more cost-efficient healthcare system.
The effectiveness of the competence center can be significantly expanded and enhanced through communication with those affected. Therefore, in cooperation with the German Federal Association of Cluster Headache Self-Help Groups, the idea of ​​a competence center for cluster headaches was developed and first implemented in 2007. Following statewide implementation with the AOK Schleswig-Holstein (a German health insurance provider), a nationwide integrated care network for the treatment of headache disorders was developed in cooperation with the Techniker Krankenkasse (a German health insurance provider). The goal was to enable nationally coordinated treatment pathways for effective, rapid, and accessible diagnostics and therapy. The Kiel Pain Clinic, together with private-practice pain specialists and cluster headache self-help groups, initiated a specialized care network nationwide. This network aims to provide local access to specialized practices. Relevant regional pain therapy centers can be located nationwide via the internet. At the same time, care pathways were coordinated and optimized for efficiency through treatment pathways.
The goal of the nationwide coordinated treatment pathways within the framework of integrated headache care (IV-K), coordinated by a supraregional center of excellence, is modern, effective, rapid, and accessible diagnostics and therapy for those affected.

• The nationwide treatment network with specialized regional centers and clinics receives further training on current treatment options for cluster headaches, and the treatment pathways are specially coordinated.
• By professionalizing on site, qualified contact points for cluster headache-affected people are built and expanded nationally in the federal states.
• Cluster headache attacks without effective prevention are considered an emergency with the possibility of short-term presentation to the Competence Center for Rare Headache Disorders.
• A consultation service from the competence center is provided for regional doctors to provide information about therapy problems.
• Joint research projects are planned and carried out to improve care
• The treating physicians will be informed about the self-help work of the cluster headache self-help groups
• Supra-regional medical training courses are held with the participation of cluster headache self-help groups
• A nationwide list of regional contacts for cluster headache self-help groups and local network partners is maintained and made available on the Internet.
• In addition to national networking, networking with international working groups is also important. The task is therefore to bring together scientific findings globally and to make them available and bundled as quickly as possible for care in the treatment network.
• Effective and rapid knowledge transfer, along with the direct incorporation of patients' needs, should optimize clinical care and improve cost-effectiveness. The development of a web-based progress registry can assess treatment pathways and evaluate their cost-effectiveness.
• Optimization of diagnostics and treatment should be promoted by supporting initial, advanced and further training, as well as by involving nursing staff and support professions.
• Public relations work, as well as the involvement of health policy and healthcare payers, are intended to bring together the needs of the insured community and individual patients.

The nationwide headache treatment network and the development of further centers of excellence are being gradually expanded and developed. Specialized centers wishing to become involved in this area are very welcome.