Secondary Survey

Secondary Survey

Secondary surveys on e-REC reported cases allow the collection of a brief amount of routine clinical data (such as diagnosis, therapy, monitoring, etc.) for quality assurance and for understanding the clinical presentation of the reported condition. No personally identifiable data are collected.

The survey questionnaire utilizes EU Survey which is supported by the European Commission is used. Additionally, Webropol is used, a secure online tool that is endorsed and supported by NHS Greater Glasgow & Clyde and NHS Scotland. All information provided will be kept in compliance with the UK Data Protection Act (2018) and General Data Protection Regulation (GDPR 2016/679). These secondary surveys are included within the UK ethics approval for e-REC, but participating centres are advised to check if they need any additional local approvals. Research teams interested in developing secondary surveys should contact the Registry Team at an early stage at registries@lumc.nl. More information about retaining data from the registries can be found here.

We do encourage clinicians not to apply for the developing of secondary survey for the pathology on which there are condition specific modules already available.

The following surveys have recently been conducted

  • Adrenal:
    • Adrenal Gland Disorders and COVID-19
  • Bone Dysplasia:
    • Fibrous Dysplasia/McCune Albright Syndrome
    • Osteogenesis Imperfecta
    • Rare Bone Disorders and COVID-19
  • Calcium & Phosphate:
    • iCalcium & Phosphate Disorders and COVID-19
    • Pseudohypoparathyroidism/inactivating PTH/PTHrP signaling disorder (iPPSD)
  • Genetic Endocrine Tumors:
    • Genetic Endocrine Tumors and COVID-19
  • Glucose & Insulin:
    • Glucose & Insulin Disorders and COVID-19
    • Hyperinsulinism
  • Growth & Genetic Obesity
    • Growth & Genetic Obesity Disorders and COVID-19
    • Growth & Genetic Obesity
  • Pituitary:
    • Pituitary Disorders and COVID-19
  • Sex Development & Maturation:
    • Congenital Hypogonadotropic Hypogonadism
    • SDM Disorders and COVID-19
    • Venous thromboembolism in Cushing syndrome of different origin
    • XY DSD
  • Thyroid:
    • Thyroid Disorders and COVID-19