Solve JPS
Investigating the Biological and Genetic Drivers of Juvenile Polyposis Syndrome
Solve JPS
Investigating the Biological and Genetic Drivers of Juvenile Polyposis Syndrome
About this study:
The purpose of this study is to better understand:
the biology and genetics of JPS;
why individuals with Juvenile Polyposis syndrome (JPS) develop polyps in the gastrointestinal tract, particularly those who do not have a known genetic mutation.
Researchers hope that learning more about this information can improve early detection, risk assessment, and potential future treatments for JPS.
Researchers also aim to create a biobank and research registry to support ongoing research and connect families affected by this condition.
To enroll in the study, you must:
Be between 6 months - 85 years of age
Meet inclusion criteria for one of the following:
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- have a clinical diagnosis of JPS;
- may have pre-diagnosis symptoms such as polyps, blood in stool, or elevated calprotectin;
- or be a family member of someone affected by JPS.
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Live nearby or willing to travel to Stanford University Campus
Be an Individual or guardian who is willing and able to consent in English
What will I be asked to do?
ENROLLMENT: Meet inclusion based on study screening and give permission to the study team to access your health information
SAMPLE COLLECTION: Collect biological samples such as blood, stool, and urine. Sample collection can happen at the following places:
- At the conference hosted by The Solve Polyposis Foundation & Stanford Snyder Lab.
You may learn more about the event here: Solve JPS Jamboree. - Clinic visit at Stanford University Campus
Voluntary Participation
Your participation in this study is entirely voluntary. Your decision not to participate will not have any negative effect on you or your medical care. You can decide to participate now but withdraw your consent later and stop being in the study without any loss of benefits or medical care to which you are entitled.
If you are interested in learning more and potentially enrolling, please fill out this interest form:
Frequently Asked Questions
Do I get access to my data?
If you are interested and if we are able to, you may choose to receive findings from your samples and data directly related to this research.
If you ask the study team and if we are able to, we can give you a copy of the uninterpreted data generated (‘Raw Data’) from your collected data and samples. These data are data that have not been analyzed or interpreted (so it is not in a form that would make sense to many people, other than trained professionals who specialize in that area).
For all results and data, it is important to remember that these are research results/data and not a replacement for your usual medical care. You should always confirm any research results in a clinical setting before you act on them. You should also talk to your healthcare provider before acting on any results from this study.
What exactly is expected of me or my child?
- Share or provide access to information such as past genetic testing, medical history, and family history.
- Collect biological samples such as blood, stool, and urine. You can choose where you want to collect your samples at:
- At Solve JPS Family Conference hosted by Solve Polyposis Foundation & Stanford snyder Lab. You may learn more about the event here: Solve JPS Jamboree
- Clinic visit at Stanford University Campus
- Samples and data will be contributed to the research registry being created by the study team.
If I can't attend the Solve JPS Family Conference, can I still participate?
Yes, you can make an appointment to come to Stanford and participate in the study specimen collection.
Will the researchers share with us if my child has another condition indicated by the data?
Genomic variants (changes in the DNA) influence health or disease. In this study, we will be looking for genomic variants that might be a factor in the biology of JPS.
When we do genomic analysis, there is a very small chance that we will see a genomic variant that is unrelated to the reason you are in this study. This is sometimes known as an “incidental finding”.
If you agree, we may tell you about these findings if they relate to a disease where there is a prevention/treatment/screening test.
If there is therapy will I have a chance to enroll?
This is an observational study, there are no therapies involved. We hope that knowledge from this research can contribute to developing improved detection, treatment, and management in the future.
What is the goal of this study?
We hope that this will contribute to a more complete understanding of JPS for individuals, their families, and the scientific community. The goal of this study is to contribute additional knowledge to JPS and drive the improvement and development of earlier detection, personalized treatment strategies, and better disease management.
Is someone profiting from this study?
No individual or group is profiting from this study. The study is for research purposes only to help find information about JPS.
For questions, contact: solve_polyposis@stanford.edu
For complaints, concerns, or participant’s rights, contact 1-866-680-2906.
