CiliaVar Database – Terms & Conditions and Privacy Policy

Last updated: 19 January 2026

1. Introduction

CiliaVar is an academic, non‑profit, open‑access database developed to curate, store, and present genetic and phenotypic information related to Primary Ciliary Dyskinesia (PCD). CiliaVar is intended to support research, variant interpretation, and clinical understanding of gene–disease relationships.

CiliaVar has been developed by a collaborative team of researchers, contributors and host institutions led by the University of Dundee. Other site developers include teams based at University College London, Oslo University Hospital and Sorbonne University. By accessing or using the CiliaVar website or database, you agree to be bound by the terms set out below and are entering into an agreement with the University of Dundee on behalf of the CiliaVar collaborators.

University of Dundee is established by Royal Charter dated 20 July 1967 and is a registered Scottish Charity (charity number SC015096) having its principal office at 149 Nethergate, Dundee DD1 4HN.

2. Scope and Intended Use

CiliaVar is intended to serve as a research and educational resource for the medical and scientific community, providing curated and up-to-date information on genetic variants associated with PCD.

CiliaVar may be used to:

Explore the genetic architecture of PCD;
Support research into gene-disease and genotype-phenotype relationships;
Aid variant interpretation and hypothesis generation in a research or clinical research context.

CiliaVar is not intended to be used:

As a standalone diagnostic tool;
To make direct clinical decisions without the involvement of qualified healthcare professionals;
For self-diagnosis or self-treatment by patients or members of the public.

The information provided by CiliaVar is intended to complement, not replace, professional medical advice, clinical evaluation, or diagnostic testing. Users should always consult appropriate healthcare professionals before making medical decisions based on information derived from this database.

For patient-facing information, education, and community support, users are encouraged to visit relevant patient organisations, such as BEAT-PCD.

3. Data Sources

Data included in CiliaVar are derived from a variety of sources, including:

Peer‑reviewed scientific literature;
Public variant databases (e.g. ClinVar, gnomAD);
De‑identified data shared through academic collaborations, where permitted.

CiliaVar does not knowingly include directly identifiable patient information.

4. Privacy Policy

4.1 Personal Data

CiliaVar does not collect, store, or display:

Names, initials, dates of birth, addresses, or contact details;
Hospital identifiers or other direct identifiers;
Raw genomic data linked to identifiable individuals.

All patient‑related information is:

Fully de‑identified;
Derived from published or ethically approved sources.

CiliaVar does not process personal data as defined under the UK GDPR.

4.2 Website Analytics

CiliaVar may track limited, non‑identifiable technical information such as:

Browser type;
Pages accessed;
Date and time of access.

This information is used solely to:

Monitor website performance;
Improve usability and functionality.

No tracking is performed for advertising or commercial profiling purposes.

4.3 Legal Basis for Processing

Under the UK GDPR, any limited processing performed by CiliaVar is based on:

Public task (Art 6 (e)) and scientific research purposes (Art 9 (j));

Users must ensure that any processing of personal data they undertake while accessing or using the CiliaVar website or database is in accordance with the UK GDPR, including that there is a legal basis for processing.

5. Data Accuracy and Limitations

While every effort is made to ensure accuracy:

CiliaVar relies on published data and third‑party sources that may contain errors or evolve over time;
Variant classifications and phenotype associations may change as new evidence emerges.

CiliaVar makes no warranties regarding completeness, correctness, or clinical validity of the data.

Users are strongly encouraged to:

Consult original publications;
Cross‑reference with clinical databases and guidelines;
Apply independent expert judgment.

6. Disclaimer

CiliaVar is provided as an academic research resource and is made available in good faith. While every effort is made to ensure the accuracy and reliability of the information presented, CiliaVar does not guarantee that the data are complete, up to date, or free from error.

The CiliaVar team, contributors, and host institutions accept no responsibility for any clinical decisions made on the basis of information obtained from this database. Users are encouraged to verify all information against original sources and to apply independent professional judgment.

7. Intellectual Property

The structure, curation, and original content of CiliaVar are protected by copyright.
Users may:
- View, download, and use data for non‑commercial research and educational purposes;
- Cite CiliaVar appropriately in publications and presentations.
Users may not:
- Redistribute the database in full for commercial purposes;
- Present CiliaVar data as their own curated work;
- Use the database for commercial diagnostic services without explicit permission.

Suggested citation format will be provided on the website.

8. User Responsibilities

Users agree to:

Use CiliaVar responsibly and ethically;
Acknowledge data limitations;
Respect applicable laws, regulations, and ethical standards;
Not attempt to re‑identify individuals from aggregated or de‑identified data.

Any misuse of the database may result in restricted access.

CiliaVar welcomes feedback and corrections; however, the inclusion or modification of data remains at the discretion of the CiliaVar team.

9. Downloads and External Links

CiliaVar may provide downloadable materials and links to third-party websites, databases, or resources for the convenience of users.

While reasonable efforts are made to ensure that materials made available for download from CiliaVar are safe and reliable, the CiliaVar team does not guarantee that downloadable files will be free from errors, viruses, or other harmful components. Users are responsible for implementing appropriate safeguards, including data backup and security measures, when accessing or downloading content from the site.

Links to external websites are provided for informational purposes only and do not constitute endorsement or recommendation by the CiliaVar team, contributors, or host institutions. CiliaVar does not operate, control, or maintain external websites and has not necessarily reviewed their content.

CiliaVar makes no representations regarding the accuracy, reliability, availability, or suitability of information, products, or services offered by third-party sites and accepts no responsibility for any loss, damage, or injury arising from their use. Users who choose to access external resources do so at their own discretion and risk.

10. Changes to This Policy

CiliaVar reserves the right to update or modify this Terms & Conditions and Privacy Policy at any time.

Updated versions will be posted on the website with a revised “Last updated” date.

Continued use of CiliaVar constitutes acceptance of the revised terms.

11. Governing Law

This policy is governed by and construed in accordance with Scots law.

12. Contact Information

For questions, corrections, feedback, or concerns regarding CiliaVar, please contact:

CiliaVar Team at beatpcd@ers.net