AGS Contact Registry Privacy Policy
This Privacy Policy outlines how the Aicardi-Goutières Syndrome Advocacy Association (AGSAA) collects, uses, discloses, and protects personal data in accordance with international privacy norms and regulations (e.g. the General Data Protection Regulation - GDPR).
The Aicardi-Goutières Syndrome Advocacy Association (AGSAA) acts as controller of all data collected on behalf of the AGS Contact Registry.
Aicardi-Goutières Syndrome Advocacy Association
PO Box 2821
Crested Butte, CO 81224
USA
(917) 960-8733
info@agsaa.org
We gather personal data from individuals who willingly take part in our contact registry. Recognizing that a significant number of those diagnosed with Aicardi-Goutières Syndrome are children, we will also gather personal data from parents/guardians on behalf of children/wards. This may include but is not limited to, name, contact information, demographic details, limited aspects of the diagnosed person’s medical history, and other relevant data. The information collected will be relevant for research, treatment, support, and improving outcomes for individuals affected by this rare disease. The AGSAA may collect, store, and update any of the following information during formal and/or routine communications with its authorized representatives.
Demographic Information:
Contact Information:
Clinical Trial Participation:
Limited Aspects of the Diagnosed Person’s Medical History:
Healthcare Utilization:
Consent, Privacy, and Communication Preferences:
Communication History
The information collected will be used for the following purposes:
Notification of Research and Clinical Opportunities: Your data may be used to inform you of opportunities that advance scientific understanding of AGS and related conditions. We aim to provide you with valuable insights into research opportunities, clinical trials, and initiatives focused on improving knowledge and treatment options for AGS. Limited segments of the participant's medical history may be employed to identify relevant opportunities tailored to specific groups within the AGS community. This ensures that individuals have access to personalized options that align with their unique genotype and phenotype, among other factors.
Support Services: Your data may be used to connect you with support services, such as local/regional patient advocacy groups, counseling services, or community resources, designed to provide emotional support, practical assistance, and educational resources to individuals and families affected by AGS.
Public Health and Policy Initiatives: Aggregated and anonymized data may be used for public health surveillance, epidemiological studies, and policy development aimed at addressing the broader impact of the disease on society. This may include efforts to improve access to healthcare services, raise awareness, and advocate for policy changes to benefit individuals affected by the disease.
Drug Development: Aggregate and anonymized data collected from the contact registry may be shared with pharmaceutical companies to evaluate the potential for conducting clinical trials or establishing drug development initiatives. This aggregated data, which does not contain personally identifiable information, provides valuable insights into the prevalence, demographics, and characteristics of individuals affected by the rare disease. With this aggregated data, pharmaceutical companies can evaluate the potential patient population, identify suitable clinical trial sites, and inform the design of clinical trial protocols. Use of your data in this way facilitates the development of new treatments and therapies for individuals affected by AGS, ultimately contributing to improved outcomes and quality of life.
Improving Registry Services: The information collected may also be used to enhance the functionality and effectiveness of the registry itself, such as by identifying areas for improvement, evaluating the impact of registry activities, and ensuring compliance with regulatory requirements.
The processing of personal data within our contact registry is grounded on the legal basis of consent, as well as the public interest in advancing scientific research and supporting individuals affected by the rare disease Aicardi-Goutières Syndrome (AGS).
Consent:
We obtain explicit consent from individuals or their legal representatives (parents/guardians) before processing their personal data for participation in the registry. Consent is freely given, specific, informed, and can be withdrawn at any time.
Public Interest:
The processing of personal data is also justified by the public interest in promoting research, understanding, and support for AGS. This includes activities aimed at improving diagnosis, treatment, and care for individuals affected by AGS, as well as contributing to broader scientific knowledge and public health initiatives related to rare diseases.
By aligning with both the legal basis of consent and the public interest, we ensure that the processing of personal data within our contact registry is lawful, transparent, and respects the rights and interests of individuals affected by AGS.
We implement appropriate technical and organizational measures to safeguard personal data against unauthorized access, disclosure, alteration, or destruction. Access to personal data is restricted to authorized individuals and is subject to strict confidentiality obligations. We prioritize the security and confidentiality of personal data collected within our contact registry. To safeguard against unauthorized access, disclosure, alteration, or destruction of data, we implement robust technical and organizational measures.
Encryption and Access Controls:
All personal data is encrypted during transmission and storage to prevent unauthorized interception or access. Access to personal data is restricted to authorized individuals who require access for legitimate purposes. Authorized users must use multi-factor authentication (MFA) to access systems storing personal data. These access controls are in place to ensure that only authorized personnel can view, modify, or delete data.
Data Minimization:
We adhere to the principle of data minimization by collecting only the necessary personal data required for the purposes of the registry. Unnecessary or irrelevant data is not collected or retained, reducing the risk of unauthorized access or misuse.
Data Protection Officer:
As part of our commitment to data protection, the AGSAA has appointed a Data Protection Officer (DPO) to oversee our compliance with data protection regulations and to act as a point of contact for data protection inquiries and concerns. The DPO plays a crucial role in ensuring that your personal data is processed lawfully, transparently, and securely. If you have any questions or concerns regarding the security of your personal data or if you wish to exercise your data protection rights, please don't hesitate to contact our DPO using the provided contact details.
Name: Patrick Winters
Email: info@agsaa.org
Postal Address: AGSAA, PO BOX 2821, CRESTED BUTTE, CO 81224, USA
Regular Security Audits:
We conduct regular security audits and assessments to identify vulnerabilities and risks to the security of personal data. These audits help us proactively address security threats and ensure compliance with data protection regulations.
Employee Training and Awareness:
Our staff members undergo comprehensive training on data security and privacy practices to ensure they understand their responsibilities in handling personal data. They are also regularly updated on the latest security protocols and best practices.
Incident Response and Breach Notification:
In the event of a data breach or security incident, we have established protocols for incident response and breach notification. Individuals affected by a breach will be promptly notified in accordance with legal requirements and provided with guidance on steps to mitigate potential harm.
By implementing these measures, we are committed to maintaining the integrity, confidentiality, and security of personal data within our contact registry, thereby instilling trust and confidence among participants and stakeholders.
Personal data collected within our contact registry may be transferred to and stored in the United States, as part of our data processing activities. When transferring personal data internationally, we ensure that adequate safeguards are in place to protect the privacy and security of the data, in accordance with the requirements of the General Data Protection Regulation (GDPR).
Personal data will not be shared with third parties for any purpose without the participant’s explicit consent. Aggregate and anonymized data collected from the contact registry may be shared with pharmaceutical companies to evaluate the potential for conducting clinical trials or establishing drug development initiatives.
We will retain your personal data for only as long as you have granted consent, typically for 12 months. Your information will be deleted within 30 days upon your request or expiration of your consent.
Individuals have the right to access, rectify, or erase their personal data, as well as the right to restrict or object to its processing. Requests to exercise these rights should be submitted to the AGSAA via our contact form (https://agsaa.org/contact), e-mail (info@agsaa.org), or by phone (1-917-960-8733).
We reserve the right to update or modify this Privacy Policy at any time. Any changes will be communicated to individuals through appropriate channels. If modifications to the privacy policy impact the handling of personal data for which consent has been previously provided, the AGSAA will seek renewed consent.
For questions or concerns regarding this Privacy Policy or the handling of personal data, please contact the AGSAA via our contact form (https://agsaa.org/contact), e-mail (info@agsaa.org), or by phone (1-917-960-8733).
By participating in our contact registry, individuals acknowledge that they have read and understood this Privacy Policy and consent to the collection, use, and disclosure of their personal data in accordance with its terms and conditions.
Date of Last Update: 2024/03/29