AGS Contact Registry Overview
You are invited to join a contact registry hosted and managed by the Aicardi-Goutières Syndrome Advocacy Association (AGSAA). The AGSAA is a global coalition of deeply dedicated parent advocates working alongside clinicians, researchers, and scientists. We are united in our desire to improve the lives of individuals and families living with and yet to be diagnosed with Aicardi-Goutières Syndrome (AGS), using our learned experience and honoring those before us.
The purpose of this registry is to provide you with a way to stay connected with the AGS community, raise awareness, and access valuable information including updates related to AGS, projects, and clinical trials, resources, and event invitations. Learn more in our news post.
What is a contact registry?
A registry is a collection of information about individuals, usually focused on a specific diagnosis or condition. We, specifically, are looking to gather and maintain information about individuals with or caring for someone with AGS.
WhAT DO I NEED TO DO?
The first step is to consent to the contact registry (1-3 minutes):
Once you provide consent, please fill out the contact form (3-5 minutes):
What is involved?
If you opt to join the registry, you'll be granting consent for the AGSAA to gather and retain basic details about you, and, if relevant, your children and dependents. You will be asked to provide basic personal information such as name, contact details, and demographic data as well as limited aspects of the diagnosed person’s medical and treatment history. Once registered, you may receive periodic updates, newsletters, or communications from the registry about research studies, clinical trials, support groups, or other relevant information related to the AGS disease community. Your consent will remain effective for a duration of 12 months, following which you will be contacted to renew your consent. Your information will be deleted within 30 days in the event that re-consent is not obtained.
Who will see my information?
Only authorized representatives of the AGSAA will have the ability to access the information you provide. This may include board members, directors, contractors, and volunteers engaged in activities related to the legitimate use of the data. Your information will be handled with the utmost care and will only be accessed for purposes outlined in our privacy policy.
What information will be collected from me?
The information collected will be relevant for research, treatment, support, and improving outcomes for individuals affected by this rare disease. By consenting to this registry, you permit the AGSAA to collect, store, and update any of the following information during formal and/or routine communications with its authorized representatives.
Demographic Information:
Name
Date of birth
Gender
Ethnicity
Geographic location
Spoken Language(s)
Relationship to the diagnosed
Contact Information:
Mailing Address
Email address
Phone number
Social Media Profiles
Clinical Trial Participation:
Past or current participation in clinical trials or research studies related to the rare disease
Limited Aspects of the Diagnosed Person’s Medical History:
Date of diagnosis
Diagnosis method (e.g. genetic testing, clinical assessment, molecular and biochemical testing)
AGS Genotype
Availability of treatment (e.g. JAK Inhibitors, Reverse Transcriptase Inhibitors, or other drugs known or investigated to be disease modifying)
Healthcare Utilization:
Names and contact information of healthcare providers involved in the patient's care
Insurance or Healthcare System Information
Consent, Privacy, and Communication Preferences:
Consent for data collection and use
Preferences for communication with the AGSAA
Communication History:
A historical summary of communication with the AGSAA
How will my information be used?
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.
It's important to note that your data will be handled with the utmost confidentiality and security, in accordance with applicable laws and regulations. Your privacy rights will be respected at all times, and your data will only be shared with authorized individuals or entities for legitimate purposes outlined above.
What are the benefits of joining a registry?
This registry will provide opportunities to connect with other families affected by AGS, if you choose to, and allow AGS to communicate information on a number of issues, including disease information, provider and family resources, clinical trials, and news and updates that affect the AGS community. If you choose to participate in this contact registry, you will not receive payment nor will you be charged for participating.
What are the risks?
The risk of participating in the registry is a loss of confidentiality, meaning that the information you provide could identify you.
How long will my information be stored?
We will retain your personal data for only as long as you have granted consent. Your information will be deleted within 30 days upon your request or expiration of your consent.
What rights do I have regarding data stored by the AGSAA?
You have certain rights regarding your personal data, including the right to:
Access and receive a copy of your personal data.
Rectify any inaccurate or incomplete personal data.
Request the erasure of your personal data.
Restrict or object to the processing of your personal data.
For more detailed information about how the AGSAA protects the privacy of its contact registry participants, see the AGS Contact Registry Privacy Policy.