SCID National Monthly Conference Call and Webinar. May 4, Chair - Michele Caggana, ScD, FACMG. U.S. & Canada: Access Code:

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1 SCID National Monthly Conference Call and Webinar May 4, 2015 Chair - Michele Caggana, ScD, FACMG U.S. & Canada: Access Code:

2 Standing Agenda Agenda Led by Dr. Michele Caggana Welcome and New Participant Introductions Michele Caggana Presentation SCID Implementation in North Dakota by Joyal Meyer, RN, MSN, Director, Newborn Screening Presentation "Tell Us What You Think Survey Results Amy Brower Discussion - Survey Results and Next Steps Michele Caggana Open Discussion - All 2

3 Presentation SCID Implementation in North Dakota by Joyal Meyer, RN, MSN, Director, Newborn Screening 3

4 Presentation "Tell Us What You Think Survey Results by Amy Brower 4

5 Answered: 46 Skipped: 0 Q1: Have you participated in the monthly calls?

6 Q2: If you have participated in the past, how recently? Answered: 43 Skipped: 3

7 Q3: The monthly calls are recorded and are available. Have you ever used the recorded material? Answered: 46 Skipped: 0

8 Answered: 43 Skipped: 3 Q4: Have the past calls met your needs?

9 What did you like about past calls? What do you think worked well? As we were getting ready to start screening, all the information was useable. current topics are discussed. also there is sharing of other states' experiences. expertise Has been hard for me to capture the focus now. Why still continue? To what end? Hearing about different states' experiences Hearing how other programs have met common challenges in implementing new screenings. Hearing how other states have handled issues that we have come up against. Hearing other people's experiences. I like many states participate and are available to give recent updates. I like practical information about implementation and case presentations. I liked to see where the nation was in implementing SCID It is helpful to learn the status of SCID NBS implementation and the clinical information.

10 What did you like about past calls? What do you think worked well? As we were getting ready to start screening, all the information was useable. current topics are discussed. also there is sharing of other states' experiences. expertise Has been hard for me to capture the focus now. Why still continue? To what end? It was very helpful to hear about states already screening for SCID while we were in the planning and implementing phases prior to going live. It's always nice to get an update from states who have started and continue to screen for SCID. knowing where States are in the implementation process; positives and negatives during the process; Learning how other programs are managing since (and progressing toward) start-up testing for SCID. We just started officially testing April 1. Materials and comments from other states who are screening Overall, they are very informative. Programs sharing experiences (troubleshooting, common issues and rare findings) Presentations that were focused on certain topics (automation, QC, etc) Reports from states that deal with follow up of screen positive infants. Details about how cutoffs and protocols were determined in start up and adjusted as program gained experience.

11 What did you like about past calls? What do you think worked well? As we were getting ready to start screening, all the information was useable. current topics are discussed. also there is sharing of other states' experiences. expertise seeing the national map change colors as other states started screening, the opportunity to hear about the outcomes that other states were finding, hearing from expert clinicians sharing experiences; protocols, methodologies, best practices, etc. Sharing interesting findings and how states overcome obstacles. Sharing of the experience of others which has helped me to plan for potential implementation in my local setting. State updates The expert speakers and the state updates with how implementation went/is going in their state. The updates about new programs. Discussions about specific topics. The updates from various states and the sharing of the problems/solutions Updated information about implementation and discussion about the process Updates from states already screening; experts on the subject useful information is sometimes distributed and these are short and concise When the states that are currently screening reported on what they had seen since the last call. When physician's like Dr. Puck share their knowledge.

12 What didn't you like about the past calls? As my state is not yet screening, I didn't feel I had anything to contribute. Frequent cancellations of calls and some date changes make attendance difficult. logistics Not always relevant to where we were in the process. Not enough audience participation; topics get repetitive. Nothing Nothing really but improve the reception and other audio-visual presentation. Minimize or eliminate noise interference from participants to have a better understanding of conversations and discussion Requiring new states to provide their SCID timelines publically. This can be a sensitive issue for some states as they are dealing with issues beyond their control. Some of the calls have not covered much material and were very brief. In those instances, I thought it would have been more beneficial to combine that call with another one. In other words, a call every month may not be necessary. when people who are presenting are calling in on a cell phone. The state map should be labeled with the individual states names on it.

13 What didn't you like about the past calls? Sometimes the focus seems solely for the laboratory and not necessarily for the follow up programs Technical clichés; presenters who have never spoken before often don't know how to participate Technical difficulties in getting the calls started Technical issues because I was dialling in from overseas. Time difference but worth it! technical issues substantially detract from content There was some confusion in the past about when the calls were - the fourth Friday of the month or the final Friday of the month. I believe that using the listservs as reminders has helped clarify the confusion. time of day they take place (I'm in patient care at 3pm Mondays) Too often calls were cancelled making it hard to remember from call to call what would be discussed. Missing information: when states don't participate it is hard to get a complete picture. I know not everyone can make every call, but some agendas work best when the relevant states are on the call and participate. We have not yet implemented SCID. I will probably participate more after we do. It was helpful to get a general idea of how things are going. What didn't you like about the past calls? when people who are presenting are calling in on a cell phone. The state map should be labeled with the individual states names on it.

14 What suggestions do you have for future calls? Wait until survey results. Mire task oriented Utilize a polling feature during the calls Share data on false positive and false negative, long-term follow-up on true positives Require more feedback from the labs that are screening and spend more time on what states are about to begin screening and when. Request information on up to date screened numbers from all states before the call so they can be included in a slide. As much as possible know which states are about to start screening. Better follow up reporting on whether positive screens were positive cases or not. Rehearsals for the presenters before going live. Provide some updates on how the new PE SCID kit/method is doing in various states. Outcome data--what are treatments and survival for true SCID cases? How many non-scid lymphopenic infants are there and what are their diagnoses, treatments? Is there support for parents whose infants are called back for more testing, and does this reflect real evidence-based data or is it based on anecdotes and hypotheses? Now that we are in maintenance mode for most of the country, reduce frequency of calls (every other month or quarterly). Those programs just coming online with SCID screening can contact existing Programs for assistance between calls. Set up topics in advance (as much as possible) to cover issues such as new programs' experiences, rare disorders found through screening, QA/QC issues, etc.

15 What suggestions do you have for future calls? More of the same. Perhaps an updated discussion about the actual treatment of the infants diagnosed from clinicians. More great speakers! make sure all callers are automatically muted when entering the meeting Just continue the calls. Continuing improvements in international access. Continue to hold them! change time they occur (although, as I above, I did not know I could listen afterwards, so probably not as big a deal but still would like to listen live) Are they still necessary? Always reports from states about what worked and what didn't, stumbling blocks. agenda Additional long-term follow up information (health and developmental outcomes), clinical information states should consider gathering as far as LTFU data that is similar or variable between types of SCID, evidencebased practice guidelines post-transplant, etc. A call every month may not be necessary.

16 Q8: What topics are of interest to you? Check as many as you'd like. Answered: 44 Skipped: 2

17 What topics are of interest to you? Other Please Specify At this point, anything related to SCID NBS. Health Information Technology Pooling outcome data to learn best practices and help states rationally adjust cutoffs for TRECs as well as what follow-on tests should be done within the state vs. ad hoc by immunology providers.

18 Q9: What is your role in newborn screening? Check as many as you'd like. Answered: 44 Skipped: 2

19 Any other thoughts you would like to share? A monthly reminder of scheduled conference calls At this momento retired, but active in research Can you please start one of these calls for the LSDs? I've only been in my position as Director of Genomics and Newborn Screening for a little over a week, so these calls will be new to me. It's hard to get a good momentum going when the calls are cancelled on a frequent basis. I really learn a lot from these calls and look forward to them, so please keep them going. Keep it up! Many thanks for making these calls available to us. Overall, I enjoy the monthly calls and find them helpful. survey works well! Thank you for all your hard work. Thank you for providing such a useful resource. Thanks for supporting this effort - it has been helpful to our state over the years. the survey form did not open the box for question 8 Other (please specify) : For quesion * Implementation cost, guidelines, suggested materials and equipments. Since we have other countries colaborating or considering implement SCID, other countries with some experience can suggest study, proceedings or guidelines for evaluation/or implementation. These calls are very helpful. Please continue with the monthly calls. Valuable service for the newborn screening and research/diagnostic communities!

20 Discussion Survey Results and Next Steps by Michele Caggana 20

21 Open Discussion Please send in topics at least two weeks before the monthly call 21

22 Future Calls First Monday of each month 3 PM Eastern Please submit topics for discussion Welcome presentations from groups and efforts 22

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