The published Profiles Registry data are freely available for researchers. You can download the data under the following conditions:
- Data are used for scientific, policy or socially relevant (i.e. non-commercial) research.
- Data will only be made available after an approved data request via NCR Data Request. To receive the data request form, please go to: https://gegevensaanvraag.iknl.nl/gegevensaanvraag . For initial contact send an e-mail to gegevensaanvraag@iknl.nl with info@profielstudie.nl in cc.
- Whenever a paper is written using Profiles Registry data, the author is required to send a copy to Profiles, c/o Nicole Horevoorts (address: Postal box 231, 5600 AE Eindhoven). In addition, the following acknowledgement must be included: “This paper draws on data of the Profiles Registry.” Besides this acknowledgement researchers must also refer to the following article (describing the Registry):
van de Poll-Franse LV et al., The Patient Reported Outcomes Following Initial treatment and Long term Evaluation of Survivorship registry: Scope,rationale and design of an infrastructure for the study of physical and psychosocial outcomes in cancer survivorship cohorts, Eur J Cancer (2011), doi:10.1016/j.ejca.2011.04.034 - Access to data is for personal use only. Data users are prohibited from making copies of the data available to others.
- Anyone wanting to use the data should contact Profiles personally to request access to the data. This way we can then keep track of who the users are and can notify users of developments regarding the data.
- Using data in a paid assignment for a third party is only permitted in return for payment. Additional restrictions apply here. Data users are required to consult Profiles before using data for this purpose.
- Students are also permitted to use the data for scientific purposes. However, the password provided will become inactive after a period of two years, but can be renewed if necessary.
- If doubt exists as to whether the data are used in accordance with the conditions above, it is up to the board of Profiles to decide whether to grant a password.
The published Profiles Registry data are available for commercial research under conditions. For more information please contact the PROFILES research team:
Email: info@profielstudie.nl
Phone: +31 (0)88 234 6803