★ MSF Clinic Programme

Myhre Syndrome Clinics

Levels of Care — what to expect at each designation

Designation Criteria	Level 1	Level 2	Level 3	Level 4
Clinical Expertise with MS	1+	2+	5+	5+
Staff Requirement	—	—	Designated Care Coordinator Biannual meeting with MSF Clinic Coordinators	Designated Care Coordinator Biannual meeting with MSF Clinic Coordinators
Required Specialties	Single Discipline	1+ Core Disciplines Referral pathway to core specialties	Genetics, cardiology, pulmonology, ENT, audiology, GI, physical therapy, psychology	Genetics, cardiology, pulmonology, ENT, audiology, ophthalmology, GI, physical therapy, psychology, anesthesia, orthopedics, neurology
Coordinated Scheduling	—	Same-day visits with multiple specialists; may require multiple days	Same-day visits with multiple specialists; may require multiple days	Same-day visits with multiple specialists; may require multiple days
Extended Coordinated Care	—	—	Coordinates access to all specialty providers	Coordinates access to all specialty providers Provides patient navigation
Pediatric Care	—	—	✓ Yes	✓ Yes
Adult Care	—	—	Yes, or have a transition care plan	Yes, or have a transition care plan
Patient & Family Experience	Shares MSF Welcome Packet	Shares MSF Welcome Packet	Shares MSF Welcome Packet	Shares MSF Welcome Packet
Natural History Data	—	Follows standardized lifespan surveillance	Follows standardized lifespan surveillance Collaborates with other sites	Follows standardized lifespan surveillance Collaborates with other sites
Research & Clinical Trials	Supports Registry Participation	Supports registry participation Tracks outcomes	Supports registry participation Tracks outcomes Eligible for clinical trials Research-capable workflow	Supports registry participation Tracks outcomes Actively participates in clinical trials IRB + research coordinator Annual reporting of research