TY - JOUR AU - Boettcher, Johannes AU - Filter, Bonnie AU - Denecke, Jonas AU - Hot, Amra AU - Daubmann, Anne AU - Zapf, Antonia AU - Wegscheider, Karl AU - Zeidler, Jan AU - von der Schulenburg, J.-Matthias Graf AU - Bullinger, Monika AU - Rassenhofer, Miriam AU - Schulte-Markwort, Michael AU - Wiegand-Grefe, Silke PY - 2020 DA - 2020/11/20 TI - Evaluation of two family-based intervention programs for children affected by rare disease and their families – research network (CARE-FAM-NET): study protocol for a rater-blinded, randomized, controlled, multicenter trial in a 2x2 factorial design JO - BMC Family Practice SP - 239 VL - 21 IS - 1 AB - Families of children with rare diseases (i.e., not more than 5 out of 10,000 people are affected) are often highly burdened with fears, insecurities and concerns regarding the affected child and its siblings. Although families caring for children with rare diseases are known to be at risk for mental disorders, the evaluation of special programs under high methodological standards has not been conducted so far. Moreover, the implementation of interventions for this group into regular care has not yet been accomplished in Germany. The efficacy and cost-effectiveness of a family-based intervention will be assessed. SN - 1471-2296 UR - https://doi.org/10.1186/s12875-020-01312-9 DO - 10.1186/s12875-020-01312-9 ID - Boettcher2020 ER -