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<p>Studies on patient-reported outcomes (PROs) among cancer survivors are increasing but are most often limited to PRO and clinical data. To better understand the underlying biological mechanisms that mediate a decline in health after cancer, several PROFILES-registry studies were enriched with biological data. This paper summarizes lessons learned from collecting blood samples to obtain biomarker data among survivors and controls in large-scale ambulatory cohort studies. These lessons address financial challenges, ethical issues, insurance, legal matters, standardization of assessment, recruitment, communication with participants, lab facilities and protocols, transportation, the need for a biobank, and the value of a normative population. We also describe our experiences with collecting remote blood samples in these studies among cancer patient populations and a study in our normative population to illustrate these issues further.</p>

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Remote blood collection among cancer patients and age- and sex-matched controls for biomarker and genetic analyses using the PROFILES registry

  • 期刊论文

  • 发表日期：

    2026年1月3日

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  • Floortje Mols,
  • Sandra van Cappellen-van Maldegem,
  • Meeke Hoedjes,
  • Nicole Horevoorts,
  • Simone Oerlemans,
  • Belle H. de Rooij,
  • Nicole Ezendam,
  • Chiel de Theije,
  • Geja Hageman,
  • Dounya Schoormans

摘要

Studies on patient-reported outcomes (PROs) among cancer survivors are increasing but are most often limited to PRO and clinical data. To better understand the underlying biological mechanisms that mediate a decline in health after cancer, several PROFILES-registry studies were enriched with biological data. This paper summarizes lessons learned from collecting blood samples to obtain biomarker data among survivors and controls in large-scale ambulatory cohort studies. These lessons address financial challenges, ethical issues, insurance, legal matters, standardization of assessment, recruitment, communication with participants, lab facilities and protocols, transportation, the need for a biobank, and the value of a normative population. We also describe our experiences with collecting remote blood samples in these studies among cancer patient populations and a study in our normative population to illustrate these issues further.