Question: Why should I register?
Answer: By registering for a username and participating in the discussion, you have the opportunity to have a voice in designing research studies. Without registering, you may read the discussions, but you cannot post a comment or follow a Research Community.
Question: I want to participate, but I do not want my identity known. Can I keep my identity anonymous?
Answer: Yes, when you register, please click “keep my personal details private”. After you click on the box, you will be asked to create a pseudonym. You may a pseudonym you are comfortable with.
Question: I can describe myself as more than one of the categories in the registration page (e.g. I am a parent of a child with Joubert syndrome and a scientist). If I fit more than one category, can I select how I am listed on my Mosaic signature?
Answer: Yes, you can modify your Mosaic signature to what suits you best. Please select all categories that pertain to you (e.g. “My family member or someone I take care of has this condition” AND “I am a scientist/researcher”). Then in the “My Signature Line” you can modify your signature line to “Parent of a child with Joubert Syndrome”, “My child has Joubert Syndrome”, or however else you want to identify yourself.
Question: My Primary Condition of Interest is Celiac Disease. May I join the Joubert Syndrome discussion forum?
Answer: Yes, you may join any and all of the Mosaic discussions. To receive updates about comments and updates in another Research Community, click on “Join the Group”.
Question: I’m not a researcher/scientist/health care provider, how can I contribute to Mosaic?
Answer: Everyone’s experience is unique and the medical research community can learn from individual experiences. So, join Mosaic and share your opinions and perspectives. We want to hear from you!