What is the 23andMe Systemic Sclerosis Research Study?
The 23andMe Systemic Sclerosis Research Study is focused on better understanding the underlying genetic and environmental factors that contribute to systemic sclerosis. The ultimate goal of this research is to help develop an effective treatment for systemic sclerosis that can improve the lives of those living with the condition.
How It Works
Participation in the study is simple and can be done entirely from home. If you are eligible, you will receive a 23andMe Health + Ancestry kit at no cost. After providing a saliva sample, you will be asked to answer survey questions about your overall health and your experience with systemic sclerosis.
Who is eligible?
You can participate in the study if you:
- Have been diagnosed with systemic sclerosis
- Are 18+ years old
- Live in the US
How do I Participate?
- Enroll and consent through the 23andMe website so you can contribute your genetic data and survey responses to the Systemic Sclerosis Research Study.
- Respond to their short questionnaire to determine your eligibility to participate. If you are eligible, you will receive a 23andMe Health + Ancestry Kit at no cost.
- Provide a DNA sample (from your saliva) for genetic analysis. 23andMe will securely store this saliva sample/DNA in their laboratory.
- Complete two short online surveys from 23andMe about your overall health and your experience with your condition.
How does 23andMe use my data?
If you choose to participate in this study, 23andMe will use your data in accordance with their Privacy Statement, 23andMe Research Consent Document, and the Systemic Sclerosis Research Study Consent Document, including: 1) for research purposes as a Systemic Sclerosis Research Study research participant and 2) to provide you Services as a customer of 23andMe. If you agree to the Systemic Sclerosis Research Study Consent Document, you will consent to share individual data with 23andMe’s qualified third party partners including advocacy organizations, clinical research centers, and patient registries and/or databases. Your data will be stripped of identifying information, such as your name and contact information. If you agree, your de-identified individual-level data may be accessible by other qualified research collaborators for the purpose of autoimmune disease research.
We encourage you to read these consent documents carefully. For your records, you can print each of the consent documents or review them at any time by going to your 23andMe Account Settings. You may also withdraw your consent at any time from your Account Settings.
What is the benefit to me?
New customers (anyone who has not yet participated in 23andMe’s services and has not had their saliva analyzed prior to enrolling in a study) who meet the study eligibility criteria will receive the 23andMe Health + Ancestry Service kit at no cost.
Existing customers are individuals who have been genotyped by 23andMe prior to joining the study, and are welcome to complete the Systemic Sclerosis Research Survey.
If you have questions about the research study or enrollment process, you are welcome to contact Gloria Blecha, Director of Patient Engagement at the Scleroderma Research Foundation: email@example.com or 415.834.9444.