ARCHIVED: Ohio Rare Disease Advisory Council (RDAC) Meeting 6/23/2022

Ohio Rare Disease Advisory Council (RDAC)

6/23/2022 1 - 3 p.m.

Virtual Teams Meeting

Agenda

Adjourn

Minutes

RDAC Minutes

6/23/2022

Randi Clites called the meeting to order and welcomed everyone to the meeting.

The roll was called.

In attendance:

A quorum is established.

Guests: Brian Hill - Defiance County Health Department, Steven Alexander - ODM, Lisa Griffin - ODH, Kimberly Mathews, ODH Parent Consultant (ODH RDAC Admin Support)

Randi welcomed and thanked everyone for joining today.

Randi shared this will be the last virtual meeting as the executive order will be expiring June 30. Any meetings after July 1 that are public meetings do need to be held in public. This includes RDAC sub workgroups.

Minutes from the last meeting were shared. Randi asked for a motion to accept. Angela Snyder made a motion to accept. Eddie Pauline and Dr. Ahuja seconded. Randi asked for comments. No comments. Minutes were voted in favor to accept by the Council.

Presentations: Eileen Sullivan, Anne Clark, Amista Lipot (see PowerPoint Slides).

Randi thanked presenters and asked for presenter ideas for next meeting. Eddie Pauline suggested asking a provider or two to present on what it is like from the provider perspective to pivot treatment and be creative with treatment. Dr. Pena offered to provide a presentation on developing or thinking out of the box when there is no treatment. Rep. Liston offered to share as a pediatric hospitalist when you have those undifferentiated little ones that just don't feed or grow very well and have to navigate a little bit about what that means for families and next steps. Eileen Sullivan agreed to would be a great idea to highlight what occurs in the emergency room setting as this is a HUGE hurdle for families. She asked if we have access to an E.R. physician that could speak to this. Angela Snyder suggested someone from Dentistry as dentistry is significant in treating rare disease individuals. Anne Clark suggested focusing on rare diseases many times don't fit the 'textbook'. Patrick Londergan suggested a presentation on med student training related to rare diseases - How do they prepare docs for what may super rare and doesn't fit the 'textbooks' - when it doesn't, what is the protocol? What is the preferred option or the best practice for the doctor when they aren't sure what it is?

Sub Committee Updates were presented:

Research - Dr. Pena/Dr. Kopp

• This subcommittee met on June 13. There was a discussion on the state of research in Ohio. Some of the things that we discussed whether we should divide research initiatives, basic science, and clinical research. We decided to keep them together for now and then divide if it becomes necessary. Potential roadblocks for investigators to initiate or continue research. We discussed state registries and what would the roadblocks be. What are the roadblocks for families and patients to participate. Some discussion on state and community resources for families for instance Ohio Family2Family and the ODH Parent Consultants. We discussed crosstalk and cross pollination across institutions and across regions and how the state could promote these cross institutional collaborations that might have inherent institutional roadblocks like setting up data transfer agreements and material transfer agreements.

Discussion occurred around other state's RDAC committees. It was reported that Ohio is the largest RDAC thus far. NORD is engaged with many state RDAC's.

Andrea Hoffman suggested it would be interesting for the research committee to understand how many patients have participated in clinical trials and what that would look like, especially since some of the rare diseases are smaller to see that data and then see if we could work on that in the state of Ohio.

Next meeting dates:

• September 22, 2022 (2 - 4 p.m.) - in person in the Riffe Building.
• December 15, 2022 (2 - 4 p.m.) - in person.

Lisa Griffin and Patrick Londergan will work on instruction sheet for the meeting and parking and get it out to members.

Patrick made motion to adjourn meeting. Motion seconded. All agreed, meeting adjourned.