Dietetic Education and Training in Inherited Metabolic Disorders: An SSIEM-Dietitians Group Survey

This Privacy Notice explains how your personal data will be collected, used, stored, and protected in connection with this survey.

1. Data Controller

Data Controller:
Society for the Study of Inborn Errors of Metabolism (SSIEM)

Address:
PO Box 3375,
South Croydon, CR2 1PN
United Kingdom

Email: This email address is being protected from spambots. You need JavaScript enabled to view it.

2. Purpose of the Survey

The purpose of this survey is to better understand educational pathways, training experiences, and professional development needs of dietitians working in Inherited Metabolic Disorders (IMD).

Survey findings may be used to:

• Inform SSIEM-DG educational and professional development initiatives.
• Support workforce planning and training discussions.
• Produce aggregated reports.
• Present findings at scientific meetings and congresses.
• Publish findings in peer-reviewed journals.

3. Information We Collect

We may collect:

• Professional and educational information relevant to your role and training.
• Survey responses relating to your experiences and opinions.
• Optional personal information, including:
  • First name
  • Surname
  • Email address

Providing contact details is entirely optional and is not required to complete the survey.

4. Lawful Basis for Processing

Personal data collected through this survey will be processed on the basis of your consent under applicable data protection legislation.

You may withdraw your consent at any time by contacting us using the details provided above. Withdrawal will not affect the lawfulness of processing undertaken prior to withdrawal.

5. How Your Data Will Be Used

Survey responses will be analysed collectively and reported in aggregated form.

Where you provide contact details, these will be used solely to:

• Contact you regarding future SSIEM-DG educational activities.
• Contact you regarding future professional development opportunities.
• Contact you regarding related research initiatives.

Contact details will not be used for commercial marketing purposes.

6. Confidentiality and Anonymisation

Survey results will be reported in a way that does not identify individual participants.

Where personal identifiers are provided, they will be stored separately from survey responses wherever reasonably practicable and accessed only by authorised personnel involved in this project.

7. Data Storage and Security

The survey is hosted using SurveyMonkey.

Appropriate technical and organisational measures are in place to protect personal data against unauthorised access, disclosure, alteration, or loss.

Access to identifiable data will be restricted to authorised members of the project team.

8. International Transfers

Your information may be processed or stored by SurveyMonkey and its service providers. Where personal data is transferred outside the UK or European Economic Area (EEA), appropriate safeguards will be implemented in accordance with applicable data protection legislation.

9. Data Retention

Survey data will be retained for 10 years following completion of the project and any related publications.

After this period, personal data will be securely deleted, anonymised, or otherwise disposed of in accordance with the Data Controller's retention policy.

10. Your Rights

Subject to applicable legislation, you may have the right to:

• Request access to your personal data.
• Request correction of inaccurate information.
• Request deletion of your personal data.
• Restrict processing of your personal data.
• Object to processing in certain circumstances.
• Withdraw consent at any time.
• Lodge a complaint with the relevant data protection authority.

11. Contact Information

If you have any questions about this survey or how your personal data is being processed, please contact:

This email address is being protected from spambots. You need JavaScript enabled to view it.