Thank you for your interest in being part of our registry build! You do not have to have any prior experience on patient registries. Our first call will include a short introduction about the who, what, when, where, and why of our registry.
As of late September, we are working on survey development. Over the last few months of the year, we will move from surveys through several other areas of interest, and we appreciate your willingness to review and discuss these steps with us.
We have members from seven time zones who have expressed interest. The schedule of ten meetings below might appear to be very random, but it was done to try to ensure that everyone had at least three calls they could join.
Document management will be done via Google Drive – each member of the committee will get a personal invitation link to access the surveys and other work. You can go anytime into the Registry Committee folder(s) to look at and comment on the files. Your recommended edits will be tracked in individual colors so everyone can see these documents in real time.
Scheduled calls will allow us to discuss the topics listed next to each date/time. These calls will be recorded and stored in a private folder on YouTube (link provided to all confirmed committee members) that you can access anytime to catch up on meetings you can’t make. We do not expect you to be on every call, though you are certainly welcome to try!
Our goal is to ensure that once we submit all of our work for approval and the “go live”, a group of us have seen the types of things we are looking to study, and no one feels like anything vital is left out or that we are asking pointless questions. THANK YOU for joining us on this mission.
Once you have had a chance to review this page and the dates below and it all looks good to you, please RSVP for the meetings at this link (also found below the calendar of calls). You may come back to that link at any time to adjust your rsvp for one or more of the calls if needed. Two days before each call we will consult the RSVP list and send the Zoom link to join the call.
Please reach out to Leslie or Gretchen at any time with questions.
