Huntington’s Disease Society of America Centers of Excellence Program

2020 Letter of Interest

 

After reading the Center of Excellence Program Description for 2020, please complete this brief, online Letter of Interest (LOI) to help HDSA determine your eligibility and the level of funding that is applicable to your institution.  To download the Center of Excellence Program Description for 2020 please click here

 

When providing your responses, please include data on only those patients that receive care at your HD clinic.  Institutions that were designated as Level 1 and Level 2 HDSA Centers of Excellence (COE) in 2018 or 2019 do not need to complete an LOI if there is no change in their level status. Instead, you will be asked to complete a Progress Report in October.

 

However, if you are requesting a change in level, or if your site was designated an HDSA Center of Excellence in 2017, then you must re-apply beginning with the submission of an LOI. If you are uncertain of your status, please contact George Yohrling at gyohrling@hdsa.org before completing this LOI.

 

The deadline to complete the LOI is September 13, 2019 at 5pm EDT.  HDSA will not accept LOIs after that time.  Failure to submit an LOI on time will mean forfeiting any monetary award for 2020.  Upon submission, all LOIs will be reviewed by HDSA to ensure the applicants meet the minimum standards to become an HDSA COE and applicants will be notified as to which level of funding they may apply based upon the criteria they meet.  A full application will be distributed to those that do meet the requirements.  You will receive notification of your LOI status no later than September 27, 2019.

 

here are three granting levels under the HDSA Center of Excellence designation.

 

  1. Level 3: Centers that receive Level 3 funding (one year grant of up to $20,000) are clinics that provide a core set of services and support to persons with HD and their families; however these services do not need to be available at the time of application (see below).

        Level 3 sites must:

  • Have a minimum of 25 patients at the time of application.
  • Offer HD clinic at least one half day per month.
  • Provide their HD patients and families a connection to HDSA support groups.
  • Provide in-services to LTC facilities and assist in identifying placement for HD patients/families.
  • Provide all of the services as outlined in chart of services below.

 

  1. Level 2: Centers that receive Level 2 funding (annual grants of up to $50,000) are institutions that offer comprehensive HD diagnostic and therapeutic services as outlined on page 2 of the Program Description within a specific catchment area as delineated in their application and award.

Level 2 sites must offer all of the services listed for Level 3 plus:

  • Be a credentialed research site of the Huntington Study Group (HSG) by the application deadline of November 29, 2019.
  • Prospective clinics are encouraged to be active Enroll-HD sites by the application deadline.
  • Have a minimum of 75 patients at the time of application.
  • Offer HD clinic at least one full day per month.
  • Provide lay and professional education.

 

  1. Level 1: Centers that receive Level 1 funding (annual grants of up to $75,000) offer comprehensive HD diagnostic and therapeutic services as outlined in the Program Description and have established a formal partnership(s) with other HD clinics, within a specific region as delineated in their application and award.

                Level 1 sites must offer all of the services listed for Level 2 and 3 plus:

  • Have a partnership with another HD clinic or institution to expand access to HD care which has a minimum of 10 unique HD patients at time of application.
  • Have a minimum of 150 patients (not including patients at partner site(s)) at the time of application.

 

If you have any questions, please contact Dr. George Yohrling, Senior Director, Mission and Scientific Affairs at gyohrling@hdsa.org

 

Center of Excellence Chart of Services


2020 HDSA Center of Excellence Letter of Interest

Administrative Information
Additional Clinic Contact
Are you seeking Level 1 funding? *
3) How many individual HD patients does your clinic currently see on an annual basis? *
How often is your HD clinic currently held? *
 
Is your institution/clinic an accredited Huntington Study Group (HSG) site? Note: Prospective clinics that are not credentialed by HSG site at the application deadline cannot apply for Level 1 or 2 funding. *
Is your institution/clinic an “active” ENROLL-HD site? “Active” means the Enroll-HD contract between your institution and CHDI is executed. Note: Prospective clinics are encouraged to be active Enroll-HD sites by the application deadline. *
Please complete the grid below to best describe where your institution provides these essential HD services on the day of your HD clinic: *
 In ClinicOn CampusCommunity Referral
Clinic director (HD experience)
Neurologist(s) (HD experience)
Psychiatrist (HD experience)
Genetic Counselor/Testing
Social Worker
Psychology
Neuropsychology
PT - initial evaluation
OT - initial evaluation
SLP - initial evaluation
Nutrition/Diet - initial evaluation
HD clinical research opportunity
Nurse
Clinic Coordinator
Helpline/Triage
Indigent Care

Please note: If you indicated “clinic” for any of the items above, this implies those HD services are available on the same day and located in the same building as the HD clinic. If you indicated “campus”, those HD services are within walking distance or a short drive to the office.  Neither clinic nor campus located services should require a separate appointment.  “Community referral” suggests that the HD clinic will have to refer the patient to an expert within the local community for a separate appointment. Finally, be prepared to provide information about how the multidisciplinary providers collaborate with one another to ensure optimal continuity of care for patients and caregivers.

After completing your LOI please refer above to the criteria required for each level of funding to ensure you meet the minimum standards.