[Therapeutic Pathways in Sarcoidosis. A Position Paper of the German Society of Respiratory Medicine (DGP)]. / Therapie der Sarkoidose. Ein Positionspapier der Deutschen Gesellschaft für Pneumologie und Beatmungsmedizin (DGP).

The present recommendations on the therapy of sarcoidosis of the German Respiratory Society (DGP) was written in 2023 as a German-language supplement and update of the international guidelines of the European Respiratory Society (ERS) from 2021. It contains 5 PICO questions (Patients, Intervention, Comparison, Outcomes) agreed in the consensus process, which are explained in the background text of the four articles: Confirmation of diagnosis and monitoring of the disease under therapy, general therapy recommendations, therapy of cutaneous sarcoidosis, therapy of cardiac sarcoidosis.

ERS clinical practice guidelines on treatment of sarcoidosis.

BACKGROUND: The major reasons to treat sarcoidosis are to lower the morbidity and mortality risk or to improve quality of life (QoL). The indication for treatment varies depending on which manifestation is the cause of symptoms: lungs, heart, brain, skin or other manifestations. While glucocorticoids remain the first choice for initial treatment of symptomatic disease, prolonged use is associated with significant toxicity. Glucocorticoid-sparing alternatives are available. The presented treatment guidelines aim to provide guidance to physicians treating the very heterogenous sarcoidosis manifestations. METHODS: A European Respiratory Society Task Force committee composed of clinicians, methodologists and patients with experience in sarcoidosis developed recommendations based on the GRADE (Grading of Recommendations, Assessment, Development and Evaluations) methodology. The committee developed eight PICO (Patients, Intervention, Comparison, Outcomes) questions and these were used to make specific evidence-based recommendations. RESULTS: The Task Force committee delivered 12 recommendations for seven PICOs. These included treatment of pulmonary, cutaneous, cardiac and neurologic disease as well as fatigue. One PICO question regarding small-fibre neuropathy had insufficient evidence to support a recommendation. In addition to the recommendations, the committee provided information on how they use alternative treatments, when there was insufficient evidence to support a recommendation. CONCLUSIONS: There are many treatments available to treat sarcoidosis. Given the diverse nature of the disease, treatment decisions require an assessment of organ involvement, risk for significant morbidity, and impact on QoL of the disease and treatment.

[Patient registries for rare diseases in Germany: concept paper of the NAMSE strategy group]. / Patientenregister für Seltene Erkrankungen in Deutschland: Konzeptpapier der Strategiegruppe "Register" des Nationalen Aktionsbündnisses für Menschen mit Seltenen Erkrankungen (NAMSE).

The National Action Plan for People with Rare Diseases contains 52 concrete actions, including in the fields of care, research, diagnosis, and information management. With the aim of improving the quality and interoperability of national registries in the long term, action 28 proposed the establishment of a "Rare Diseases Registry" strategy group. The strategy group began its work in 2016. In this report, the group takes into account developments at the national and international level in order to develop recommendations for national initiatives.In addition to this, the group reports on consent and implementation as well as on the adaptation of a minimal dataset for use in rare disease registries and mapping the used data elements and schemata in a metadata repository. This position paper was created by the strategy group together with additional authors. The paper reached a consensus within the strategy group and can be seen as a concept paper of the Rare Diseases Registry strategy group.

Sarcoidosis: patient treatment priorities.

Sarcoidosis patient survey reveals QoL and functionality are required as core outcomes in treatment and care, along with more multidisciplinary working by clinicians and the establishment of specialist sarcoidosis centres in every European country http://ow.ly/DTvt30mQnqc.

[Patient involvement in clinical guideline development: are patient organisations prepared for this task?]. / Patientenbeteiligung an der Leitlinienentwick- lung--sind die Patientenorganisationen für diese Aufgabe gerüstet?

The involvement of patients in the development of clinical guidelines essentially aims at ensuring and improving the quality of patient-centred care. Hence, it becomes an important tool for quality management in medicine since patients are learning the hard way where clinical care is lacking. This may include the inappropriate consideration of current medical knowledge, the unintelligible or insufficient information and education of the patient or information gaps at the interface between care settings. These experiences from the patients' perspective can be purposefully integrated in quality assurance measures, for example, by including the patient perspective in clinical guidelines and patient guidelines. Suitable procedures for the collection and presentation of the experiences of patient organisations are essential for the successful involvement of patients in guideline programmes. Patient organisations collect data on the experiences and attitudes of their members for different purposes. A systematic approach has been sought but hardly practised so far. This is the result demonstrated in a survey among 112 member organisations of the "Bundesarbeitsgemeinschaft SELBSTHILFE von Menschen mit Behinderung und chronischer Erkrankung und ihren Angehörigen e.V." (BAG SELBSTHILFE), a federal German self-help association of disabled and chronically ill people and their relatives. Patient participation in the "Programm for Nationale VersorgungsLeitlinien" ["Programme for National Disease Management Guidelines"] has been practised at the Agency for Quality in Medicine (AEZQ) since 2005. The experiences that have been made by those involved with integrating the concerns of patient representatives provide a starting point for a practical handout for patients and consumers participating in guideline programmes. The "Handbuch Patientenbeteiligung-Beteiligung am Programm für Nationale VersorgungsLeitlinien" [Handbook of Patient Participation in the Programme for National Disease Management Guidelines] is intended to make the process of patient participation in guideline programmes transparent and practicable. It describes the background, the organisation and the process of patient participation and offers useful advice to participating patient organisations and their representatives. In this context the question of how patient experiences might be introduced in the guideline and patient guideline development process in a structured and purposeful manner is of special importance. But so far there is too little experience, both nationally and internationally. A survey among self-help organisations shall provide an initial overview.

[Shared decision-making based on equal information. Patient guidelines as a tool for patient counseling]. / Auf einheitlicher Basis entscheiden: die Rolle von NVL-basierten PatientenLeitlinien.

In discussions on the quality of cross-sectorial health-care services high importance is attributed to patient education and patient counseling, with guideline-based patient information being considered a crucial tool. Guideline-based patient information is supposed to serve patients as a decision-making basis and, in addition, to also support the implementation of the guidelines themselves. The article highlights how patient guidelines for National Disease Management Guidelines in Germany--within the scope of patient education and patient counseling--may provide a uniform information platform for physicians and patients aiming to promote shared decision-making. The authors will also address the issue which contents should be included in patient guidelines in order to meet these requirements and which measures are required to review their quality. The present paper continues the series of articles on the Program for German National Disease Management Guidelines.

[Participation of patients in the program for national disease management guidelines--current state and implications]. / Patientenbeteiligung am Programm für Nationale VersorgungsLeitlinien - Stand und Konsequenzen.

Patient involvement has been implemented in the Program for National Disease Management Guidelines since 2005. Currently patient/consumer participation is being incorporated in terms of patients' comments of consultation papers on National Disease Management Guidelines (NDMG) and in the development of NDMG-based patient guidelines (PG). The editorial activities in patient guideline development from the beginnings to its publication are conducted in close cooperation with the patient representatives appointed by the Patient Forum. Between June 2005 and September 2006, three NDMG and three patient guidelines on asthma, chronic obstructive pulmonary disease (COPD) and chronic coronary artery disease (CAD) were produced by including patients in the guideline development process. The information provided in these guidelines is freely accessible at http://www.versorgungsleitlinien.de. The present contribution focuses on the development of patient guidelines. It describes the current state of patient involvement and joint work and indicates the implications that can be derived from patient participation in the NDMG Program. Accompanying the involvement procedures, experiences resulting from previous NDMG and PG development activities are continuously investigated for the possibility of further methodological development of consumer participation by a work group of the Patient Forum in coordination with the patient organizations involved. In particular, the procedures resulting from more intensive patient participation in patient guideline development are to be examined as to their relevance for the expansion of patient involvement in NDMG development.