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Table 6 Textbox on lessons learnt from BRE-4-MED proof-of-concept study

From: Development and proof-of-concept of a multicenter, patient-centered cancer registry for breast cancer patients with metastatic disease—the “Breast cancer care for patients with metastatic disease” (BRE-4-MED) registry

• Combination of primary and secondary data is feasible
Routinely collected data from established Cancer Registries can serve as basis and help reducing redundant data collection for physicians and can be complemented by personal PROMs follow-up information
Utilizing m-health in incurable cancer patients is in general accepted considering its increasing impact in the future. Adaption regarding patient’s benefit (e.g., m-health as personal diary or basis for doctor-patient-communication) will be required
• Strategies for strengthening patient recruitment
Identification of eligible patients through interdisciplinary tumor board
For recruiting dedicated study nurse to improve recruitment rate
Standardized reminder algorithm (postal and phone) to increase response rate
Adaption of APP/online questionnaire to allow patient keeping track of her/his own m-health entered data and utilize these data for doctor-patient-communication
Improving visibility of registry by distribution of information and rationale of the study via self-aid groups or patient leaflets