Centers of Excellence
Multiple System Atrophy (MSA) is a rare but devastating, progressive neurological disorder that is characterized by a variable combination of symptoms including parkinsonism, cerebellar and pyramidal tract signs, and autonomic dysfunction. As the name of the disorder alludes, MSA can affect multiple systems including blood pressure/cardiovascular, urogenital, gastrointestinal, sleep, pulmonary, psychiatric, and even cognition. For any one patient and their care partner(s), this multitude of symptoms can be overwhelming and requires a dedicated interdisciplinary team and requires a coordinated effort – “a village” – and support system. MSA interdisciplinary clinical care should ideally include exemplary sub-specialty care, support services, education, outreach, and research opportunities for MSA patients, care partners, and family members.
What are the Multiple System Atrophy Centers of Excellence?
The goal of the MSA Center of Excellence (COE) program is to provide access to the best possible and easily accessible multi-disciplinary clinical care and supporting services for individuals affected by Multiple System Atrophy (MSA) and their families through a geographically diverse network of local and/or regional clinical centers. In addition to coordinating care with both clinical and social services, the Centers will provide professional and lay education in the areas they serve, will be involved in, and inform patients of MSA clinical research, and collaborate with The MSA Coalition in its efforts to continually improve the lives of those affected by MSA.
The vision of The MSA Coalition is to create the standard of care in the United States in which patients, care partners, and their families are referred to MSA COEs that will provide the necessary sub-specialty expertise. Within these COEs, a multidisciplinary team will coordinate care to ensure those impacted by MSA receive a comprehensive, gold-standard, continuum of care.
- To establish a US standard for best practice of comprehensive, multi-disciplinary care in the management of MSA and to increase access to these services for patients with MSA.
- To designate and support institutions that excel with regard to knowledge and experience with MSA patient and family care, establishment of a multi/inter-disciplinary care team, education and outreach to their local community and allied health partners, and offer opportunities for participation in MSA clinical research.
- To support the MSA Coalition in its mission to improve quality of life and bring hope to those affected by MSA through care, support, community, education, and research.
Clinical and Social Services
MSA COEs provide comprehensive multi-disciplinary clinical and support services for MSA patients, care partners, and families. These services will be centered around an established MSA clinic in which an individual’s care needs have been defined, and a plan has been created by their team to fulfill those needs. Regular follow-up will be conducted to consistently coordinate care and support services for the patient, care partner, and those impacted by MSA. Each MSA COE ideally should include the following:
Basic Expectations for MSA Centers of Excellence
Each MSA COE should ideally include the following attributes. We understand that each COE will have a different makeup and include most, but not likely all, of the listed services. We support innovation in delivering comprehensive multidisciplinary care and support to our MSA patients and families.
|Established patient base at time of application||Minimum of 10|
|Minimum MSA-specific clinic time||Minimum ½ – 1 day/month|
|Telemedicine||Telemedicine option available for patients unable to attend in-person clinic visit(s)|
|COE Clinical Director||An established neurologist or autonomic specialist with MSA expertise, exceptional leadership, defined time commitment, and institutional support|
|Clinic Coordinator/Scheduler||Designated staff member to coordinate scheduling and triage patient services|
|Social Worker||Manage cases, provide support for patient, care partner, and families, provide counseling as needed, and coordinate care between multi-disciplinary team members|
|Administration||Clinical director, potential for co-director, operations committee|
|Clinical Services|| |
Required on site or available for referral or within community:
Nurse or advanced practice provider, movement disorders neurologist, occupational therapy, physical therapy, social worker, speech language pathologist
|Specialty Services|| |
Available on campus/for referral:
Autonomic specialist (cardiology/neurology)
|Specialty Testing|| |
Access to or available for referral:
Brain imaging autonomic, urodynamic, GI motility, and sleep testing.
|Mental Health Requirements||Provide referral to specialty mental health providers as needed|
|Research||Active site or ability to refer to sites with MSA clinical trials or biomarker studies. Potential for dedicated research coordinator.|
|Education||Education/Outreach efforts for medical professionals, families, and those impacted by MSA within community. Collaboration with MSA Coalition to extend education outreach.|
|Indigent Care ||Plan in place with accessible information for MSA patient and care partner to provide care to those without insurance or the ability to pay. Define financial support process to obtain Medicaid/Medicare|
|Outreach and Social Support ||Provide MSA patients and family/care partner connection to support groups, collaborate with university/institution to promote MSA COE both within the institution and to the outside community. Collaboration with MSA Coalition to provide outreach and social support.|
|Collaboration with MSA Provider Community ||Promote and provide professional education to aid in clinical diagnosis, support and improve quality of care|
|Collaboration with The MSA Coalition || |
|Expectations for Community Advocacy and Training ||Promote and provide peer and community education to promote awareness, resources, and information |
|Unique Programs||Unique programs developed and annually coordinated by your COE (symposiums, fundraisers, educational events, community advocacy and awareness events) |
|Long Term Care||Identification and liaison for long term care placement and resource support for MSA patients and their care partners|
|Palliative/Hospice Care||Identification and liaison with palliative and/or hospice care agencies to support MSA patients, care partners, and their families|
MSA Multi-disciplinary Expectations
Due to the rare nature of this disease and the complexity of its symptoms, many MSA patients see a multitude of providers before receiving their diagnosis. It is imperative that the MSA COEs provide timely, exemplary, and informative medical care from their muti-disciplinary team to MSA patients, their care partners, and those impacted by MSA.
Social Work Requirements
Social workers must be a minimum MSW within their respective state and meet all clinic and institutional requirements. Social worker role and responsibilities:
- MSA clinic pre-screening
- Symptom triage
- Referral to appropriate health care provider(s) within the MSA clinic and/or within the community
- Provision of resources to assist patients within clinic infrastructure and community
- 1 on 1 counseling for patients, care partners, and their families concerning behavioral challenges, needed resources, and advocacy
- Identification of available MSA clinical and translational research opportunities
- Community outreach to long term care facilities, respite facilities, and legal resources
- Liaison with The MSA Coalition to provide ancillary services as needed
- Collaboration with The MSA Coalition and affiliated MSA COE sites on The MSA Coalition programs, research, patient support and education, and advocacy
- Participate in annual patient and family conferences
- Participate in MSA COE training
- Attend The MSA Coalition conferences, as requested
- Facilitate relationship between the clinic and all outside resources
Facilitate the relationship between the clinic, multi-disciplinary team members, and specialty services providers both within and outside of the clinic.
- Collaboration with the following MSA Coalition resources:
- Movement Disorder Specialist Directory
- Brain donation information
- MSA community support groups
- Social Security: Compassionate Allowance Program – MSA Description
- NORD: Rare Caregiver Respite Program
- MSA Trust: Carer’s Guide
- The MSA Coalition blog
- Triage all calls and refer to appropriate provider(s) as necessary
- Assist in scheduling of all sub-specialty providers for MSA clinic patients
- Assist in clinic flow and organization on MSA clinic day to ensure all patients are receiving evidence-based, gold-standard MSA care
Work with multi-disciplinary team members to determine eligibility and coordinate care for research participants
- Ability to describe, provide informed consent, and answer questions for available research opportunities both within the clinic and MSA COE network
Designation and Progress Reports
Designation of an MSA COE is valid for one year, and each center will be required to complete an annual progress report detailing COE activity, progress, and any new programs. Renewals will occur annually and will require continuous extensive review and a letter showing institutional support.
Funding will be contingent on receipt and review of applications and annual progress reports. The MSA Coalition reserves the right to suspend COE designation and grant funding for failure to deliver services or to adhere to the terms and conditions delineated in the letter of award. Identified deficiencies should be addressed within 90 days of suspension or the COE designation will be revoked, and grant terminated.
A Letter of Intent will be posted online to request applications from interested academic institutions and/or private neurology practices. Eligible prospective Centers will be invited to submit a full application to the MSA Coalition for review.
The following information will be required:
- Region and population: Describe the area/region and population that is currently served and any potential changes that may result from the presence of MSA COE.
- Description of the MSA clinic: Provide information including history, location, frequency, billing, : accepted insurance, arrangements for seeing patients without means, and typical follow-up frequency.
- Clinical Services: Describe how access to each service is provided. Elaborate on the strengths and weaknesses of the clinic, future goals, and what changes, if any, would occur as a result of becoming a MSA COE. If your clinic offers telemedicine, provide a brief description of the program and use.
- Outreach: Describe efforts to help extend services to additional patients, families, care partners, and allied health providers.
- Education: Describe how your team contributes to educating healthcare professionals, MSA families/care partners, and the public.
- Administration: Provide specific information about your proposed Clinic Director, Social Worker, and Center Operations Team, including names and contact information.
- Supporting Material: Include the following – curriculum vitae of core Center personnel, a list of members of your multidisciplinary team and information about additional on campus providers to whom you refer MSA patients.
- Budget: Provide a budget with specific justifications for each budget item. Major categories include personnel, services, supplies, and travel. Personnel should include percentage of effort and a breakdown of base pay and fringe benefits.
- Awarded MSA COEs will receive an annual award between $10,000-$20,000 over the one-year designation period.
- Other support and institutional commitment: Describe other support for your MSA Center, including grants or donations that cover salaries, administrative support and/or space. For initial applications, include a Letter of Support from your Department Chair.
- Terms and Conditions: Agree to the Terms and Conditions outlined by the MSA Coalition COE Program. Return signed by-laws by an official authorized to sign on behalf of the institution.
Review and Scoring of Applications
Applications will be reviewed by the MSA Coalition. All applications will be scored with the following five individual criteria:
- The quality of the overall application and proposed services provided
- Regional/geographic diversity
- Unique offerings or particular characteristics that add to the MSA clinic
- Use of funds and proper distribution of budget
- MSA community activity and research
Applicants will be notified by e-mail after a designation decision has been made by the medical advisory committee. An award letter will be sent to the Center’s clinical director. If not selected, the letter will detail areas for improvement to enhance future applications.
Please contact Jessica Iregui, MSA Coalition Research & Medical Education Manager, with any questions.