Quality standards for celiac disease comprehensive care units: A Spanish multidisciplinary consensus integrating professional expertise and patient perspectives

Table 4 Scientific and educational activity quality standards for establishing a Comprehensive Care Unit for patients with Celiac Disease

Position	Definition	Mean	CV (%)	Agreement
1	The CCU-CD should, ideally, establish a registry of all actively followed patients within the specialized consultation setting, in full compliance with current data protection legislation. The registry should clearly identify cases of seronegative CD, CD with low-risk or non-compatible HLA genetics, non-responsive CD, and potential CD. Preferably, cases should be entered into a unified national registry provided by the SEEC. This registry may be used for both clinical and research purposes and, when possible, should be complemented by the collection of biological samples according to predefined Standard Operating Procedures	9.05	17.22	Very high
2	The CCU-CD should, ideally, have access to a biobank experienced in sample handling or, alternatively, establish its own sample collection to support research activities. The unit should also have the necessary infrastructure to ensure proper long-term storage of samples	9.27	14.19	Very high
3	Members of the CCU-CD should actively participate in or promote research studies related to CD	9.86	3.56	Very high
4	At least one member of the CCU-CD should participate annually in a training or continuing education activity on CD, such as congresses, courses, workshops, or specialized seminars. Continuing education should cover both clinical and research aspects	9.64	8.19	Very high
5	All professionals involved in the diagnostic process of CD, including clinical and laboratory staff, should promote joint meetings (e.g., clinical case sessions) to share and reinforce up-to-date knowledge on CD within the multidisciplinary team	9.77	4.39	Very high

CV: Coefficient of variation; CCU-CD: Comprehensive Care Unit for patients with Celiac Disease; CD: Celiac disease; ; SEEC: Spanish Society for Celiac Disease.