MDC - Professional Intake

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The Rare Epilepsy Network (REN) is creating a roadmap for Patient Advocacy Organizations to establish their own Multidisciplinary Center (MDC). Through this survey, we will identify barriers towards establishing an MDC. REN wants to ensure that Patient Advocacy Organizations understand the needs of similar rare disease families and can market their MDC in an effective and efficient manner. This is one of several surveys that REN has created to gather the experience of an MDC. REN will also seek input from clinicians and Patient Advocacy Organizations. We appreciate your time and can be reached at info@rareepilepsynetwork.com.

Email *

Privacy Statement

We will be asking you a series of questions about your or your institution's operation of your medical specialty clinic so that we can collect information about the importance of multi-disciplinary clinics to all stakeholders (clinicians, patients, institutions, biopharma, etc). Your privacy is very important to us, so we make every effort to keep your information safe and secure. All this information will be securely stored.

Phone number *

Best method of contact for you? *

Phone

Other:

What is your institution? *

What was the impetus for creating the MDC?

PAG driven

Clinician driven

Institution Driven

Grant funding

Other:

What was, if any, the institutional oversight towards starting an MDC? *

My institution required sign off

I was able to start informally

Required

CLINIC FOCUS, MODEL & GOALS

What Diseases/Disorders are treated?

Single Disease

Multiple Diseases/Disorders

Other:

Please list the disorder(s) treated (or if its a group/type of disorders) *

How are the MDC clinic visits physically managed (initial visit)?

Flow shop (seeing multiple docs one day) Team comes to patient (Patient stays in one room)

Open Shop (Pts seen via a different sequence, can be a different day) Patient comes to team (Patient travels to different room)

Mix Shop (Hybrid)

Other:

Is this your preferred clinic visit structure if there were no constraints? *

Yes

Other:

Is there coordinated care meeting for each patient towards care plan? *

Yes

Maybe

Check all Clinic Goals that apply. **If Clinical/Translational Research is selected, please use Other to describe objectives (improve quality of care, national history studies, disperse knowledge, etc.)**

Focus on Patient Care

Focus on Clinical/Translational Research

Hybrid

Other:

Clinic is 'medical home' or 'consultancy.' (**If consultancy, use OTHER to describe relationship to home team regarding aftercare, emergencies, and ongoing advice/guidance.**)

Medical "home" for patient

Serves as "consultancy"

Other:

Is there anticipated regular cadence post initial visit? *

Annual

Bi-Annual

As needed

Other:

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