ReNU Center of Excellence Application

Center Name*

Center Address

Center Website

Center Phone Number*

Clinical Lead Name*

First NameLast Name

Clinical Lead Title*

Clinical Lead Email*

example@example.com

Coordinator Name*

First NameLast Name

Coordinator Title*

Coordinator Email*

example@example.com

Email

example@example.com

Alternate Representative

This is the contact if the Coordinator is unavailable, or if there is more than 1 Coordinator

Please upload a photo of the Center to include on the ReNU Syndrome United Center of Excellence webpage

If applicable, how many patients with ReNU syndrome do you currently follow?

How many patients with ReNU syndrome do you anticipate having when the center is established?

What are the Hours of Operation?

Are telehealth visits available?

Is there a multidisciplinary care team in place?

What is the age range of patients seen?

Up to what age will patients be accepted?

If applicable, is there a transition plan in place for patients that age out?

Are any caregiver support services available?

Provide contact information for where any insurance, coverage, or billing questions should be directed to

Provide a statement that demonstrates how your center meets each of the 4 requirements for Center of Excellence designation. Additionally, how has your center helped serve our patient population thus far? In what ways do you plan to grow your center to help serve patients with ReNU Syndrome?

Is there any other information about the center you would like to share as part of the application? We welcome additional comments and feedback.

Specialists Available

Additional professionals not listed above

By submitting this form, I understand that:

Please read the form carefully and indicate your agreement by signing below.

1) Personnel
The center must have a Clinical Lead and a Coordinator. The role of the
Clinical Lead is to direct all clinical services for patients with ReNU Syndrome,
including diagnosis and treatment. This Physician must demonstrate expertise in
the medical management of ReNU Syndrome and promote clinical knowledge of
the syndrome through collaboration with others, including ReNU Syndrome
United.

The role of the Coordinator is to serve as the main point of contact for
patients and to ensure seamless patient on-boarding and continuous care. The
Clinical Coordinator must enter patient data into the ReNU Syndrome United
Registry following each patient’s visit to the clinic.

2) Multidisciplinary Care Teams
The center must offer multidisciplinary care teams that are experts in treating
highly complex patients that have a wide range of medical needs. For the full
range of symptoms and features of ReNU Syndrome, see the Comprehensive
Care Guidelines.

It is critical that the teams offer care to ReNU patients throughout their lifespan.
The center must play a leading role in helping patients navigate the transition from pediatric providers to adult providers.

3) Clinical Research and Trials
The center will demonstrate involvement in clinical research and trials for ReNU
Syndrome. The center will share knowledge of new treatments and research with patients and ReNU Syndrome United.

4) RSU Sponsored Activities
The Clinical Lead, or another representative, is invited to attend ReNU Syndrome United Conferences and Scientific Symposiums. Representatives from the center are expected to participate in ReNU Syndrome United sponsored educational programming, events and meetings.

Legal Name of authorizing person providing the content

First NameLast Name

Country

Consent

I hereby declare that our Center meets the guidelines and I am applying on behalf of my Center

Signature

Date Signed

MonthDayYear

RSU Center of Excellence Network Application

Center Personnel

Clinical Lead is the clinician in charge of overseeing all clinical services and maintaining standards of care

Center Coordinator is the primary point of contact

Center Operations