Welcome: Posterior Cortical Atrophy Program
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Posterior Cortical Atrophy (PCA) is a form of gradually progressive brain disorder related to neurodegeneration in the back parts of the brain, usually involving the parietal lobes.
Information regarding posterior cortical atrophy (PCA) clinical research program
The major goals of this clinical research program are to improve our understanding of the changes in the brain and behavior that characterize posterior cortical atrophy (PCA), with the goal of improving our ability to diagnose, monitor, and treat the symptoms of this syndrome. In addition, we aim to connect patients and families with additional resources for assessment and treatment, planning, and education.
The clinical research portion of the program involves a high-resolution MRI scan and additional visual, memory, language, and executive and attentional testing. In addition, interviews are performed with a spouse, sibling, child, or other family member or friend to obtain information about symptoms in daily life and in order to obtain additional information about the impact of PCA on family members. These evaluations are performed every six months, with repeat brain scans every year.
In addition, records obtained as part of previous clinical evaluations are reviewed. Participants are also offered the opportunity to participate in the Massachusetts Alzheimer’s Disease Research Center Longitudinal Cohort and related studies, which involve blood sampling for genetic analysis and discussion of the possibility of planning for brain donation.
Besides the research program outlined above, we aim to connect PCA patients and families with additional resources as needed. A network of other specialists who assist with our PCA program, including neuro-opthalmology at Mass Eye and Ear Institute, occupational therapy, physical therapy, speech and language pathology, social work, neuropsychiatry, and genetic counseling. We also work closely with community resources, including psychotherapists, Boston metropolitan area support groups, driving evaluation centers, and others. For more information, please contact us at MGHFTDUnit@partners.org or call 617-726-5571 and ask for Liz Lynch.
The MGH PCA Clinical Research Program is a multidisciplinary program pursuing research and clinical care of patients with PCA. The program is an active ongoing collaboration between members of the departments of neurology, speech pathology, occupational therapy, radiology, social work, and psychiatry. If you are interested in participating, we are happy to discuss the program at any time.
We are actively seeking donations to help support and increase the growth and services of our PCA Program. Please let us know if you would like to contribute any amount.
Feel free to contact us for for information (MGHFTDUnit@partners.org).