CurePSP- our organization can help those suffering with PSP/CBD/MSA

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Hi Everyone,

For more than 25 years CurePSP has been providing support and education to patients, families and healthcare providers regarding progressive supranuclear palsy, corticobasal degeneration and multiple system atrophy. We also fund research and are committed to the areas of public awareness of these diseases and advocacy. We have an affiliate in Canada (www.curepspcanada.ca) and we produce National Family Conferences in the US and Canada. In 2015 as clinical trials for PSP were launched, we developed the Patient Engagement Program (PEP) to help recruit and retain patients in these studies. PEP offers a wide range of services to educate researchers and study staff about the diseases, to help them produce materials about the studies written in a user friendly format and to assist in making study protocols easier for patients and families to be able to follow. 

As we learned more about clinical trials, we relized that study drop out is a problem across all diseases. The retention component of PEP helps each patient and their family by assigning a staff member to provide support throughout their entire participation in the study. PEP services are entirely free to patients and families. At this time we are collaborating with Bristol-Myers Squibb and AbbVie pharmaceuticals who are funding PEP services for their studies. We are grateful for the help we're receiving from these companies which makes is possible for us to help move the clinical trials ahead more efficiently and effectively.

Please feel free to contact me with any questions or comments at [email protected] or contact Jo Lindamore at [email protected]. My direct line is 443-794-4340.

Sincerely,

Trish

Trish Caruana

President/ CEO 

Patient Engagement Program

CurePSP

/curepsp.org