JS-LIFE Research Challenge

Announcements

Follow individual announcements (look for the links below each one) to hear questions and comments from discussion participants.

Exciting News! We are happy to report that the Joubert Syndrome Mosaic research team has successfully compiled the data entered by our JS community through our family registry, JS-LIFE, and we have preliminary results!

Ann Chang's picture

We put together a quick “abstract” in scientific journal format that you can read below to summarize some of the early findings.

This summary is certainly not complete-- we will share all of the data with you (and ask for your comments) in the coming weeks.

JS-LIFE: Research Progress Update

Ann Chang's picture

Thank you for your continued interest in Mosaic and JSRDF!  We want to update you about our progress on the research project we all designed together. As we began working on our research aims, we encountered some technical problems with obtaining the data needed to conduct an analysis.  This is not an uncommon problem at the start of a research project. We are working on these issues and hope to have them resolved as soon as possible so we can move forward with our analysis. We will continue to keep you updated and welcome any questions you may have at this time.

Next Step: Conduct the Research!

Oksana Gologorskaya's picture

Thank you so much for your participation and engagement with Mosaic! Your ideas and comments have been transformed into a plan to use information collected in the JS-LIFE database http://www.jsrdf.org/  to answer your top priority questions about Joubert Syndrome. The Research Team will now follow the research plan to get you answers as soon as possible. We will keep you updated on study progress over the next three months and get results to you as soon as possible!

We are writing a JS research plan. Join us now!

Ann Chang's picture

See your ideas in action. A Study Team made up of families with Joubert syndrome and researchers are using your comments posted on Mosaic to plan a Joubert Syndrome study.  Check out http://mosaic.ucsf.edu/js-life-research/challenge/post/39 to see the beginning of the research plan and post suggestions and comments.

 

This is your study. Tell us what you think!

Phase II of Mosaic starts now!

Ann Chang's picture

YOUR ideas have been transformed into a Joubert Syndrome research plan. But it’s not over yet…

Join the Mosaic community to review, revise, and improve the study protocol. Take a look at the first part of the protocol posted today that describes background and overall study aims. Let us know what you think!

Three days to go…

Ann Chang's picture

Phase II of Mosaic opens July 13!  Thank you for your insights, suggestions, and questions on Joubert Syndrome which have been transformed into a research study.  Join us to review the plan and provide feedback and comments. OPENS JULY 13!

One week countdown…

Ann Chang's picture

Phase II of Mosaic opens July 13! We have started a research study based on YOUR insights, suggestions, and questions on Joubert Syndrome.  Join us to review the plan and provide feedback and comments. OPENS JULY 13!

One more week until we write the protocol!

Ann Chang's picture

Thank you so much for your participation in Mosaic! It is inspiring to see great discussions among caregivers, researchers, and the Joubert Syndrome community. We see common themes emerging such as: how to obtain an earlier diagnosis, what are the common ways children are diagnosed, what are common medical complications, what is the impact of Joubert Syndrome on daily activities, and many more!

  • Continue sharing your research ideas until May 31.
  • Next up:  Join us in June to post comments on the written research plan.