title: Maintaining confidentiality in prospective studies: anonymous repeated measurements via email (ARME) procedure.
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.
authors: National Prevention of Suicide and Mental Ill-Health, Karolinska Institutet, Stockholm, Sweden.
authors: Vladimir
authors: V
authors: Carli
authors: Gergö
authors: G
authors: Hadlaczky
authors: Camilla
authors: C
authors: Wasserman
authors: Nicola
authors: N
authors: Stingelin-Giles
authors: Stella
authors: S
authors: Reiter-Theil
authors: Danuta
authors: D
authors: Wasserman
mesh_terms: D003142:Communication; D003219:Confidentiality / Q000941:ethics* / Q000592:standards*; D034742:Electronic Mail; D006801:Humans; D020407:Internet / Q000706:statistics & numerical data; D018907:Privacy; D011446:Prospective Studies; D012106:Research / Q000592:standards*