CurePSP Centers of Care are healthcare centers recognized as being able to provide quality care for the specific needs of PSP and CBD patients. This allows us to provide recommendations to patients on where they might find suitable care. The program will expand to cover the United States, and if your preferred care location is not on the map, please encourage to them to apply.

 

Center Finder

How To Use: 

In the search bar at the bottom of the map please select the category Center of Care. Enter your address, city and state, or postal code to locate a center of care in your area. The nearest location to you will appear in the list below the search bar, as well as on the map. Alternatively, you can search on the map to find centers.

CurePSP is aware that entries on this map may change – if you find an incorrect listing, please help us by contacting info@curepsp.org, subject line: Interactive Map Corrections.

About

Establishing CurePSP Centers of Care will provide PSP and CBD patients with greater access to care from medical centers that have experience with the disease, increase general awareness of PSP, CBD, and other related diseases, and allow outside providers to easily identify centers to refer patients for clinical trials and better overall disease management.

The identification of designated CurePSP Centers of Care will also form a network of experts in PSP/CBD clinical care to improve patient diagnosis and management. As research is paramount to advancing our knowledge of the pathophysiology and subsequent identification of targets for therapeutic agents, CurePSP Centers of Care will create a network that will be an essential component for the success of large clinical trials. In a future step (with additional funding), the CurePSP Centers of Care could also improve communication between centers in order to share research protocols, rating scales, and updates on trials.

This initiative will increase awareness of PSP and CBD at a local, national, and international level. International exposure increases the opportunity to collaborate with centers in other countries to improve patient care and innovations in research.

Mission

  • To help PSP and CBD patients find the best possible local/regional care
  • To increase awareness of PSP and CBD spectrum disorders
  • To provide local/regional resources for physicians seeking information about PSP and CBD
  • To form a network of centers that serve a base for more intense collaboration to optimize standards of patient care and establish hubs for PSP/CBD (pre-) clinical research.
  • To provide educational material to patients, caregivers, and healthcare professionals

Application Guidelines for Medical Centers

CurePSP is very proud to launch this new initiative that should equally benefit patients, their carepartners, and healthcare professionals.

The CurePSP Centers of Care will form a network of centers for more intense collaboration to optimize standards of patient care and coordinate knowledge hubs for PSP, CBD, and related neurodegenerative brain disorders. This network will greatly improve and foster both translational and clinical research, ultimately benefiting patients with novel therapeutic options. The CurePSP Centers of Care will (i) help PSP/CBD patients find the best possible local care, (ii) increase awareness of PSP and related diseases, (iii) provide local resources for physicians seeking more information about PSP, CBD, and related disorders, and (iv) provide educational material to patients, caregivers, and healthcare professionals. The central goal and mission of the CurePSP Centers of Care are to improve the quality of life of patients suffering from PSP, CBD, and other related diseases.

Deadlines and How to Apply

Deadlines for completing this application survey are November 30 and May 31 every year at 2:00 pm Eastern Standard Time (New York). Your application will be reviewed by CurePSP’s Medical Steering Committee within three months after submission. We expect to have two calls for applications per year.

For any further questions or technical issues while completing this survey, please contact Dr. Alex Klein, VP of Scientific Affairs, at +1 347-294-2871 or klein@curepsp.org. If you don’t receive a separate and personalized confirmation email from CurePSP within one week after submission, please contact Dr. Klein. It is advised to keep a electronic copy of all (free text) responses in a word file, in case IT issues occur during the electronic submission process.

Please use the following link to apply for a CurePSP Centers of Care membership:

https://www.surveymonkey.com/r/CurePSP_Centers_of_Care

 

What do we provide?

CurePSP will designate all centers that pass the review process carried out by CurePSP’s Medical Steering committee as CurePSP Centers of Care. CurePSP will subsequently promote the network of CurePSP Centers of Care, raise awareness of PSP and advertise the Centers of Care as referral points for clinical trials and other research initiatives. CurePSP will also list all Centers of Care on its web site. CurePSP’s Patient Engagement Program will support clinical trials and collaborate with the Centers of Care. All centers will periodically receive updates on the latest clinical research in the fields of PSP, CBD, and related diseases. We also will provide print patient material and brochures for the individual centers. Currently, there are no funds allocated for each center. However, CurePSP intends to fundraise around this initiative increasing the chances of future grants to be disbursed among the centers.

What do we expect from the Centers of Care?

We expect the best possible care for all PSP/CBD patients and compliance with the gold standards of patient care. We also expect that the award certificate is clearly visible in the communal waiting area of the applying center. Furthermore, we anticipate that the CurePSP Centers of Care are promoted as much as possible and that each center becomes a hub of PSP/CBD expertise. CurePSP will help to fundraise around the individual centers as much as possible; we assume that donors will be recognized on site to standards established by CurePSP. 

Eligibility

All medical centers where patients can receive diagnostic and therapeutic care are eligible to apply. The principle investigator has to be an MD or DO (probably a neurologist, MDS, behav. neurologist, but not necessary). Centers without medical school affiliation are welcome to apply as well.

Procedures

The award “CurePSP Center of Care” is for the duration of two years. The review of the application is based on a self-reported survey; hence, we expect honest and true completion of such survey. After two years, each center will be re-evaluated. The review will be carried out by the CurePSP Medical Steering Committee. Current members are: 

Dr. Irene Litvan
(UCSD)
 Dr. Lawrence Golbe
(Rutgers) 
Dr. Alex Pantelyat
(Johns Hopkins)
 Dr. Brent Bluett
(Cleveland Clinic Las Vegas)

Questions? Comments?

 

Please contact Dr. Alex Klein, Vice President Scientific Affairs at CurePSP, if you have any further questions with regard to the CurePSP Centers of Care.

404 5th Ave.; 3rd Floor
New York, NY 10018
Phone: +1 347-294-2872
E-Mail: klein@curepsp.org

Disclaimer

The CurePSP Centers of Care are a loose network of medical centers that will provide PSP and CBD patients with greater access to medical centers that have experience with the disease, increase general awareness of PSP, CBD, and other related diseases, and allow outside providers to easily identify centers to refer patients for clinical trials and better overall disease management.

Medical Centers are invited to apply to become a CurePSP Center of Care. Based on CurePSP’s review criteria, the CurePSP Center of Care designation is intended only to recognize participation in the program. The quality of provided by the CurePSP Centers of Care is the responsibility of each designated center. CurePSP has no responsibility or liability for the quality of care or activities of such centers or clinics.

The CurePSP web site is provided for informational purposes for healthcare professionals, patients and their caregivers and is not intended to provide specific medical advice, diagnosis, or treatment. Patients should always seek advice from a physician or other qualified health care provider for individual medical needs The CurePSP website may provide links to other internet sites; however, CurePSP is not responsible for the availability or content of these external sites.