RSU Center of Excellence Network Application
ReNU Syndrome United
Center Name
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U.S. Address
Street Address
Street Address Line 2
City
State / Province
Postal / Zip Code
Address, if outside the U.S.
Center Website
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Center Phone Number
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Mission, Vision and/or Purpose of the Center:
DESIGNATED CENTER PERSONNEL
CLINICAL LEAD: Physician who directs diagnostic and treatment services for ReNU patients with demonstrated expertise in the medical management of ReNU Syndrome; collaborates with others and RSU to promote clinical knowledge.
Clinical Lead(s): Name - Title - Email
*
You may enter more than 1, as needed
PRIMARY CENTER COORDINATOR: Primary point of contact for families. May perform intakes and needs assessments, participate in research efforts, enter patient data into the ReNU Syndrome United Registry or Natural History platform(s) following visits
Family Contact(s): Name - Title - Email
*
You may enter more than 1, as needed
MULTIDISCIPLINARY CARE TEAM
The COE should provide a multidisciplinary care team with expertise in treating ReNU syndrome symptoms & medical needs. Dedication to treating ReNU patients throughout their lifespan and help patients navigate the transition from pediatric to adult care
Is the Center
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Clinical
Research-Based
Both
Other
Will the Center accommodate pediatric to adult transition?
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Yes
No
TBD
If applicable, how many patients with ReNU syndrome do you currently follow?
Is there a multidisciplinary care team in place?
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ReNU Center Specialists that Will Coordinate to See Patients
Cardiologist
Dentist
Dermatologist
Developmental or neuro-psychologist
Diet and Nutritionist
Endocrinologist
Feeding therapist
Gastroenterologist
Genetic Counselor
Metabolic specialist
Neurologist
Epileptologist
Occupational therapist
Ophthalmologist
Orthopedics
Otolaryngologist
Pediatrician
Physical therapist
Sleep specialist
Speech pathologist / therapist
Urologist
Other
Center Specialists' Name, Degree, Division and Department
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Explain how the center will ensure that specialists are continually abreast of the latest developments in ReNU syndrome
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Will there be service for other RNUopathy populations (ex. RNU4-2 recessive, ReNU2, ReNU5, etc.)? If so, please describe here
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CLINICAL TRIALS & RESEARCH
Planned or demonstrated involvement in clinical research and trials for ReNU syndrome; committed to sharing knowledge of new treatments and research with patients and RSU
If applicable, describe current or planned ReNU syndrome research
RSU COMMUNITY SUPPORT
COE members are invited to send a representative to attend RSU Conferences and Scientific Symposiums; COE representatives are encouraged to participate in RSU educational programming, events and meetings
Describe how the center is already, or plans to, engage with families, provide resources, advocate for expanding access to diagnoses, and enhance care delivery
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Is there any other information about the center you would like to share as part of the application? We welcome additional comments and feedback.
Please upload a logo, photo of the Center, and/or any other promotional materials to include on the ReNU Syndrome United Center of Excellence webpage
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Name of Submitter
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First Name
Last Name
Email
example@example.com
Country
Confirmation
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I hereby declare that our Center meets the guidelines and I am applying on behalf of my Center
Signature
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Date Signed
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Day
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