Rationale for the CASA-MS Study
Many advances have been made in recent years in the understanding of the early stages of multiple sclerosis (MS) and significant gains were achieved in slowing progression.
However, the fact remains that people in the initial stage of MS can, unpredictably and randomly, have symptoms that significantly progress in severity.
Unfortunately, there is essentially no research about people with MS (PwMS) who are in advanced stages of the disease. There are no therapies. There are no "best practices". Clinicians need answers through targeted research to guide their management of such patients. People facing advanced progression and their families want to be able to plan for their future.
Many people with advanced stages of MS have symptoms that require that they either leave their families to live in nursing homes, where they receive paid and very expensive skilled care, or stay in their homes, with care provided by family and friends, which comes with its own costs on the family. We believe that what can be learned from research of this MS subpopulation will be valuable to everyone with MS, regardless of their current disability status, and to all those who care for them.
In our desire to improve the lives of those with all stages of MS and explore new horizons of MS research, BNAC researchers visited The Boston Home in Dorchester, Massachusetts in 2019. This resulted in creation of collaborative Comprehensive Assessment of Severely Affected Multiple Sclerosis (CASA-MS) study.
The CASA-MS study compares advanced-stage MS in participants from this residential care facility to age-, sex- and disease-duration matched MS participants, who are routinely followed at specialized MS center. It will establish a comprehensive framework within which to study the unique needs of those severely affected PwMS (SAPwMS). The findings will encourage future clinical trials exploring disease progression in this understudied cohort. We hope this research will lead to first-ever innovative therapies and devices to reduce pain and other MS symptoms, ease caregiving and reduce care costs, as well as identify factors that can improve quality of life for both those in this advanced stage and their caregivers.
What are the CASA-MS Study Goals?
The central hypothesis of this study is that better understanding of SAPwMS will lead to better early identification and better treatment and care.
The project's main goals are to identify features and risk factors of severe MS, develop more sensitive outcome measures to better monitor disease progression, and to better understand how protected enriched environments, like the one in The Boston Home, can contribute to patient health.
Specific objectives of this study are to:
- Fully characterize and define SAPwMS by identify imaging, clinical and laboratory features and risk factors that can lead to an earlier recognition of severe MS or predict transition to severe MS
- Develop more sensitive outcome measures such as radiological biomarkers to better monitor disease progression
- Address challenges expressed by clinicians in assessing cognitive progression
- Understand how protected, enriched environments may contribute to patient health and how findings might be used by general care facilities and at home
- Increase awareness of the needs of SAPwMS
Who are the Participants in the CASA-MS Study?
The study will include 60 SAPwMS in the Boston Home, Boston, MA, and 60 age-, sex- and disease-duration matched MS patients for comparison purposes., who are routinely followed at Jacobs MS Center, Buffalo, NY.
CASA-MS Study Timelines:
The project was recently approved by the University at Buffalo's Institutional Review Board in 2020 and the first study subjects are enrolled, with careful planning of COVID-19 protections.
In 2021, we will perform initial examinations at The Boston Home and at Jacobs MS Center.
The research focus will be:
- Determining the inflammatory and neurodegenerative imaging correlates of cognitive and physical disability in SAPwMS.
- Discerning the effect of physical disability on mental status in SAPwMS
- Developing new assessment tools that require minimal manual or motor activity and vision interaction
- Create new measures for cognitive processing speed
From 2022 - 2024, we will perform follow-up visits to collect longitudinal data and to understand better the evolution of the disease in participants.
Funding of the CASA-MS Study
CASA-MS research over 4 years will cost $1,000,000. Funding will come from a variety of sources including government agencies, societies involved in clinical care and research of MS patients, pharmaceutical companies, corporations, public and private foundations, and individuals.
We are grateful for support in any amount to make possible ground-breaking research that may help PwMS and the families that care for them.
To donate to CASA-MS study, please click here.