Phosphorus Responsible Testing Study

You’re invited to contribute to the future of genetic testing. Sign up today.

WHAT IS PHOSPHORUS’S RESPONSIBLE TESTING STUDY?

Phosphorus is a healthcare company focused on developing genetic tests that empower individuals and families. Genetic tests can only help families understand their risk for disease if they are able to accurately and dependably detect disease. At Phosphorus, we value responsible genetic testing and this study is one measure we have taken to ensure our tests are delivering accurate results.

The IRB-approved Responsible Testing research study seeks to enroll individuals with known mutations (or changes in DNA) to verify that our genetic tests correctly identify the mutation. We invite you to be a part of this study and help Phosphorus continue to provide patients with answers they can be confident in.

WHY DO WE NEED YOUR HELP?

As genetic tests expand to include a wider variety of diseases and mutations, it is no longer possible to rely on available research samples to assess the accuracy of genetic testing. For this reason, we are reaching out to individuals with confirmed genetic conditions or confirmed carrier status to obtain more samples. Once we have your sample, we will process it in the lab and compare the result to your previous report in order to validate our genetic tests. Though this study won’t provide any additional information to you, your participation will be crucial in developing high-quality genetic tests that could help provide answers to individuals like you in the future.

To participate in the Responsible Testing study, we ask for your permission to use:
●    A saliva sample
●    Your existing genetic test report ordered by your physician

We know that your time is valuable, and we appreciate your assistance in working to provide responsible, accurate genetic testing.

WHAT DO I NEED TO KNOW?

Can I participate in this study?
You are eligible to participate if:
●    You have a confirmed clinical diagnosis with a causative genetic variation, or you are a confirmed carrier of a mutation, that we would like to validate on our tests.
●    You are at least 18 years old.
●    You do not have a personal history of cancer, chemotherapy, or bone marrow transfer.
●    You are a member of a participating disease advocacy group or a patient at a participating clinic.

Do I have to participate in this study?
●    Participation is completely voluntary. The study will not treat or prevent disease.
●    You can choose to discontinue participation at any time until we run your sample and upload your information to our database. To withdraw from the study, please contact Phosphorus. All remaining identifiable samples will be destroyed.
●    Only authorized Phosphorus research personnel will be able to link your genetic results to your personal medical information.
●    If we determine we need a sample of better quality, we will contact you within one year to collect additional samples.

What are the risks and benefits?
●    Your participation in the study will help us make more accurate tests.
●    While this study will not directly benefit you, it will help others who receive genetic testing in the future.
●    There are no physical risks associated with collecting a saliva sample.
●    If genetic information becomes known, it may affect employment, medical care, and ability to purchase insurance. Some state and federal laws protect against various forms of genetic discrimination.
●    Organizations such as Aspire IRB and Phosphorus may inspect or copy your research records for quality assurance and data analysis, but your identity will be kept confidential.

Interested subjects should email the research team at Phosphorus (research@phosphorus.com).

If you have questions or concerns regarding your participation or withdrawal in this research study, or if you have any questions about your rights as a research subject, you should speak with the research team at Phosphorus (research@phosphorus.com).

This study was reviewed by Aspire Independent Review Board (IRB). An IRB reviews research to protect the rights and welfare of study participants. If you have problems, concerns, suggestions, questions or information about your rights, please call Aspire's Quality Assurance and Regulatory Compliance Department at 1-877-366-5414 (toll free). Although Aspire IRB has approved the information provided in this information sheet and has granted approval for the investigator to conduct the study, this does not mean Aspire has approved your participation in the study.