Have you been recently diagnosed with PSP or CBD? Is your doctor unfamiliar with PSP and CBD and you would like a second opinion?  Are you unsure of where to turn for qualified, professional medical advice?

The CurePSP Centers of Care network was formed in 2018 to help you and your family find the answers to these questions, with the aim of building a network of centers across the United States and Canada where PSP and CBD patients and caregivers can find medical help. Please see our Center Finder below.

Mission

  • To help PSP and CBD patients find the best possible local/regional care
  • To increase awareness of PSP and CBD spectrum disorders providing educational material to patients, caregivers, and healthcare professional
  • To provide local/regional resources for physicians seeking information about PSP and CBD
  • To promote collaboration between centers and to optimize standards of patient care and to establish hubs for PSP/CBD (pre-)clinical research 

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. The program will expand to cover the United States and Canada, and if your preferred care location is not on the map, please encourage to them to apply.

Center Finder

How To Use: 

  • At the bottom of the map please select the category Center of Care.
  • Then 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.

For Healthcare Professionals

MAY DEADLINE EXTENDED TO JULY 31, 2018

CurePSP will be considering applications November 30 and May 31 each year. Applications will be reviewed by CurePSP’s Medical Steering Committee within three months after submission. CurePSP expects to have two calls for applications per year.

Please use this link to apply for a CurePSP Centers of Care membership.

The survey can be downloaded by clicking here (this is for preparation purposes only. The survey must be submitted through the online platform). 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.

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, CurePSP expects honest and true completion of such survey. After two years, each center will be re-evaluated. Reviews will be carried out by the CurePSP Medical Steering Committee. Membership of the Medical Steering Committee is determined by CurePSP.

Academic centers with research and residency training programs and where patients can receive diagnostic and therapeutic care are eligible to apply. The principal investigator must be an MD or DO (probably a neurologist, MDS, behavioral neurologist, but not necessary).

(i) 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 CurePSP Centers of Care as referral points for clinical trials and other research initiatives. 

(ii) CurePSP will also list all CurePSP Centers of Care on its web site. 

(iii) All CurePSP Centers of Care will periodically receive updates on the latest clinical research in the fields of PSP, CBD, and related diseases. 

(iv) We also will provide print patient material and brochures for CurePSP Centers of Care. 

(v) Currently, there are no funds allocated for each CurePSP Centers of Care. However, CurePSP intends to fundraise around this initiative increasing the chances of future grants to be disbursed among the centers.

  • We expect from the Center 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 Center. 
  • Furthermore, we anticipate that the Center is promoted as much as possible and that the Center becomes a hub of PSP/CBD expertise.
  • CurePSP will fundraise around the CurePSP Centers of Care. 
  • The Center will be required to reapply for this designation every two years. 
  • A Center’s compliance with this standard is subject to review by CurePSP from time to time. 
  • The Center will provide a prominent space in a public area for signage provided by CurePSP that will identify the facility as a CurePSP Center of Care. Depending upon external signage conditions, external signage may be considered, at the discretion of the awarded medical center. CurePSP will provide this signage. No other signage may be used designating the CurePSP Center of Care without written authorization from CurePSP. 
  • The Center will stock, display, and distribute informational literature provided by CurePSP. CurePSP will bear the cost of creation and production of this literature.
  • By applying to this initiative you agree to the terms and regulations as provided on this web site.

CurePSP will provide a free license to the Center for use of certain of its intellectual property, subject to adherence to standards for its use that are prescribed by us. CurePSP holds registered trademarks for the following names and related artwork: CurePSP®, Unlocking the Secrets of Brain Disease®, Because Hope Matters®, and Powering Clinical Trials®.

Medical Steering Committee

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

No Liability for Operation of the Centers or External Sites

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 care is the responsibility of the Center. CurePSP has no responsibility for the quality of care or activities of the Center. CurePSP assumes no liability in connection with operation of a CurePSP Center of Care or in relation to its designation as such.

CurePSP will list the Center on its web site. The CurePSP website 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 healthcare 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.