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Maintaining confidentiality in prospective studies: anonymous repeated measurements via email (ARME) procedure
  1. Vladimir Carli1,
  2. Gergö Hadlaczky1,
  3. Camilla Wasserman2,
  4. Nicola Stingelin-Giles3,
  5. Stella Reiter-Theil3,
  6. Danuta Wasserman1
  1. 1National Prevention of Suicide and Mental Ill-Health at Karolinska Institutet (NASP), Stockholm, Sweden
  2. 2Department of Child and Adolescent Psychiatry, New York State Psychiatric Institute-Columbia University, New York, USA
  3. 3Department of Medical and Health Ethics, Medical Faculty, University Hospital Basel, Basel, Switzerland
  1. Correspondence to Dr Gergö Hadlaczky, National Prevention of Suicide and Mental Ill-Health (NASP), Karolinska Institutet, Stockholm, Sweden; gergohad{at}gmail.com

Abstract

Respecting and protecting the confidentiality of data and the privacy of individuals regarding the information that they have given as participants in a research project is a cornerstone of complying with accepted research standards. However, in longitudinal studies, establishing and maintaining privacy is often challenging because of the necessity of repeated contact with participants. A novel internet-based solution is introduced here, which maintains privacy while at the same time ensures linkage of data to individual participants in a repeated measures design. With the use of the anonymous repeated measurements via email (ARME) procedure, two separate one-way communication systems are established through ad hoc email accounts and a secure study website. Strengths and limitations of the approach are discussed.

  • Scientific research
  • confidentiality/privacy

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Footnotes

  • Competing interests None.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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