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Whole genome sequencing giveaway

ABOUT THE COLLABORATION: The Rare Advocacy Movement (RAM) has taken Nebula Genomics up on their offer of five (5) FREE clinical-grade whole genome sequencing (WGS) tests. All 5 winners will be chosen at random. RAM is not endorsing Nebula Genomics sequencing and/or analysis services. This collaboration is to serve as a vetting opportunity, of which, upon completion, each winner will be contacted by a member of RAM as a follow-up in order to obtain feedback on the services provided by Nebula Genomics.

ABOUT THE GIVEAWAY: Each winner will receive one clinical-grade WGS test, which should provide patients with valuable insights to help them make informed decisions about their health. According to Nebula Genomics, included in the test is the analysis of over 220+ disease and 40+ carrier conditions, pharmacogenomics, and an ancestry report.

Patients should expect to receive the entirety of their raw genomic data in a BAM/VCF file, as well as a 30-minute virtual genetic counseling follow-up appointment to discuss their results.

WHAT WINNERS SHOULD EXPECT:

Preliminaries: A representative from RAM will reach out to the winners by April 12, 2019 to confirm interest in participation. A representative from Nebula will then reach out to the winners by April 19, 2019 in order to obtain the information needed in order to complete the WGS test order and receive complete information regarding the Nebula Genomics offerings.
Kit: Once approval is obtained to ship, in about 6-15 days, the WGS kit should arrive.
Results: After the kit is received, sequencing + quality control to clinical report generation should take between 12-16 weeks. If the winner is prompt in the returning of the Kit (ships it within ~1 week), and sample contains sufficient DNA, the whole process should be complete in about 14-19 weeks.
Follow-up: Genetic counseling session scheduling will begin within 2-3 days of the release of the WGS report.

ABOUT THE TEST: According to Nebula Genomics, patients will receive a report with details about more well-known genetic variants. This is not a diagnostic test in nature for those with complex undiagnosed disease. Nebula Genomics will not be able to interpret any variants of unknown significance. However, Nebula Genomics will provide patients with a file with their whole genome which should be able to be interpreted by their treating geneticist or university lab. Any health information provided will be for general information purposes only and is not a substitute for professional health advice. RAM does not provide any health advice and encourages you to consult with the appropriate medical and healthcare professionals.

Learn More

GIVEAWAY HAS CLOSED

TESTING DETAILS

Understand Your Disease Risks

According to Nebula Genomics, this test will give you insights on your risks for hereditary diseases in multiple categories including cancer, cardiovascular diseases, immune disorders, and more. For example, about 1 in 3 people are at risk of developing Nonalcoholic Fatty Liver Disease (NAFLD) due to a pathogenic variant in the PNPLA3 gene*. People with this variant may be able to reduce their risk of getting the disease through lifestyle changes.

Pharmacogenomics (PGx)

PGx identifies how your own genetic makeup potentially influences your response to certain medications. Your unique response to these medications can impact their effectiveness, or cause you to be more likely to experience an adverse drug reaction. For example, a variant in the CYP2C9 gene may cause you to be a poor metabolizer of NSAIDs (e.g. Ibuprofen), so you might consider talking with your doctor to choose an alternative agent.

Know What You May Pass on to Your Children

Learn if you are a carrier for a genetic condition and what you could pass on to your children. For example, if you or your partner carry a pathogenic variant in the CFTR gene, your child has a 1 in 4 chance of getting Cystic Fibrosis**. Learning your carrier status can help you, your partner, and your physician make the most informed decisions about your child’s health.

Learn About Your Traits and Ancestry

Nebula Genomics claims to also look at traits related to nutrition, athleticism, longevity, and more, as well as provide insights on your ancestry.

What the Test Screens For:

Cancer Susceptibility
Cardiovascular Diseases
Immune Disorders
Endocrine and Metabolic Disorders
Neurological Disorders
Organ Health Carrier Conditions
Insights on how effectively you metabolize or potentially react to 150+ drugs that treat a variety of conditions, including those in the following categories:
- Cardiovascular
- Endocrinology
- Gastroenterology
- Hematology
- Infectious Diseases
- Neurology
- Oncology
- Pain Medicine
- Psychiatry
- Pulmonology
- Transplantation Medicine
Insights on more than 50 traits related to:
- Athleticism
- Behavior
- Cardiovascular
- Hormones
- Immune System
- Longevity
- Metabolism
- Nutrition and Diet
- Physical Appearance
- Sensory Perception
- Substance Reaction
As well as insights on how effectively you metabolize or potentially react to 150+ drugs that treat a variety of conditions.

DISCLAIMER

RAM does not guarantee the services and/or products provided by Nebula Genomics. RAM is simply offering an opportunity for the rare disease community to learn more about Nebula Genomics offerings. Upon completion of the giveaway, RAM will follow up with each winner for an interview to collect feedback regarding their individual experience with Nebula Genomics. RAM will release a report published for public use summarizing findings of the patient experience. According to Nebula Genomics, patients will receive a report with details about more well-known genetic variants. This is not a diagnostic test in nature for those with complex undiagnosed disease. Nebula Genomics will not be able to interpret any variants of unknown significance. However, Nebula Genomics will provide patients with a file with their whole genome which should be able to be interpreted by their treating geneticist or university lab. Any health information provided will be for general information purposes only and is not a substitute for professional health advice. RAM does not provide any health advice and encourages you to consult with the appropriate medical and healthcare professionals. Should a participant not voluntarily agree to provide feedback post giveaway experience with Nebula Genomics to RAM, their application will be considered ineligible for participation.

*Source: National Institute of Diabetes and Digestive and Kidney Diseases; National Institutes of Health; U.S. Department of Health and Human Services **Source: PMID: 19092437, PMID: 21642944, PMID: 23974870, PMID: 15371902