The strategic plan outlines the Huntington Study Group's (HSG) vision, mission, and values, as well as strategic initiatives from 2015-2019 to investigate new HD therapies, expand the therapy pipeline, educate about HD research and care, develop sensitive outcome measures, expand the HSG research network, improve clinical trial efficiency, identify and develop new investigators, build human capital within HSG, and foster community. Key actions include completing clinical trials, launching new trials annually, developing online training and tools, adding new sites, and recognizing members' contributions.

1. Strategic Plan
2015-2019
Updated 3/22/16

2. Who We Are……
Our Vision
To be an invaluable
research partner
to families, sponsors
& members
Our Mission
To seek treatments
that make a
difference
Our Value
Proposition
Experienced, Credible,
Connected
2

3. o Develop and evaluate
sensitive objective
measures of HD
o Expand capabilities of
the HSG research
network
o Improve efficiency of
conducting clinical trials
HSG Strategic Thrusts 2015 - 2019
o Investigate new
therapies for HD
o Expand the pipeline of
therapies in
development for HD
o Investigate,
communicate and
educate about HD
research and care
Families Members
To be an invaluable research
partner to families, sponsors
and members
o Identify & develop the
next generation of
investigators
o Build and develop
existing human capital
o Foster community
Sponsors
3

4. 2015 Progress
o Completed phase 3 trial of SD-809
leading to a new drug application
o Conducting three additional trials of
promising therapeutics
o Formed Scientific Advisory
Committee to identify future
therapies for HD
o Created Care & Education working
group to improve HD care
o Implemented communication plan
with new website and social medial
presence
o Hosted Local Practitioners Program
at HSG 2015
Families Members
To be an invaluable research
partner to families, sponsors
and members
o Incorporated HD-CAB and novel
imaging tools in new clinical trial
o Added 9 new HSG sites: 6 in the US, 2
in Canada, and 1 in Europe
o Implemented uniform contracting
procedures and simplified budgeting
process in Signal trial
o Created and implemented new HSG
standard operating procedures
o Implemented programs to identify the next
generation of investigators
o Plan to develop mentoring/career
development program
o Collaborating with CHDI and EHDN on new
training platform
o Supported & attended HDSA and Help4HD
conferences; hosted Enroll-HD investigator
meeting at HSG 2015
o Created new HSG membership &
credentialing program (HSGLink)
o Recognize outstanding contributions by
HSG members at annual awards reception
o Record number of attendees at HSG 2015
Sponsors
4

5. o Poll HSG members to determine
if there is a need for a UHDRS
App or online version for Clinical
and Research use
o Develop and evaluate a rigorous
HD quality of life measure in a
clinical trial by 2017
o Add 2 new sites
o Develop and launch an HSG
Awareness Campaign during
HD Awareness Month
o Pilot a Participant Payment
system
2016 Key Initiative Summary
o Launch a new clinical trial
o Assist in development of
clinical trials aimed at those
with prodromal HD by 2017
o Develop on-going clinical
training programs for new
clinicians in the care of HD
(e.g. website education page,
online course, in-person
courses)
o Launch a Community Focus
Group
o Develop and pilot a
transportation initiative for
individuals that have
challenges traveling to their
care providers
Families Members
To be an invaluable research
partner to families, sponsors
and members
o Enhance HSG membership &
credentialing program
(HSGLink)
o Develop additional collaborative
efforts with partner
organizations (e.g. HDSA,
CHDI, EHDN) by 2016
o Participate in MDS, HDSA,
EHDN and other meetings
o Establish HSG Scholarship
program for annual meeting
o Create new training programs
for HSG annual meeting
o Increase opportunities for
socialization and networking
amongst members
Sponsors
5

6. Families:
Investigate new therapies for HD
Key Initiative / Action 2015-2019 Timeline / Targets
Help develop the approval of treatments for HD • Contribute to the approval of 2 FDA
approved treatments by 2019
Launch new clinical trials • Launch new clinical trial annually
Support the initiation of a phase 3 disease modifying (gene-targeted) trial • Launch by 2019
Assist in development of clinical trials aimed at those with prodromal HD • Launch by 2017
Launch clinical trials of novel therapy or treatment programs (e.g. physical therapy
existing medication, exercise therapies)
• Launch by 2018
6

7. Families:
Expand the pipeline of therapies in development for HD
Key Initiative / Action 2015-2019 Timeline / Targets
Engage 1-2 additional sponsors per year in development of HD therapies • Identify a minimum of 1 sponsor
per year
Provide forum for Innovators to advance HD therapeutics • Engage a minimum of 3 sponsors
to present at the HD Innovators
Forum each year
• Have a minimum of 100
attendees at HD Innovators
Forum per year
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8. Families:
Investigate, communicate & educate about HD research & care
Key Initiative / Action 2015-2019 Timeline / Targets
Launch communication initiatives to educate broader HD community about HD and
to build Future Contact Database
• Complete and promote HSG
overall video in 2nd quarter of
2016
• Create and implement Future
Contact Database campaign by
HDSA June 2016
Train local providers in the care of HD at in-person sessions (CME4HD) at annual
HSG meeting
• Train a minimum of 20
clinicians at annual HSG
meeting
Develop on-going clinical training programs (Clinical Care Education Program) for
new clinicians in the care of HD (e.g. webinars, online, in-person courses)
• Launch Phase 1 in 2016
• Develop Phase 2 in 2016 with
launch in 2017
Create a Community Focus Group • First meeting 1st Qtr. 2016 to
discuss roles & responsibilities
• Establish budget for attendance
at HSG 2016
Develop and pilot a transportation initiative for individuals that have challenges
traveling to their care providers – “Friends with Wheels”
• Apply for a grant from Excellus
BlueCross BlueShield by 2/5/16
• Contract with a medical motor
company by 4/1/16
• Train medical motor company
by 4/30/16
• Work with Amy Chesire to
create a Rochester region plan
of action
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9. Sponsors:
Develop & evaluate sensitive objective measures of HD
Key Initiative / Action 2015-2019 Timeline / Targets
Develop and enhance clinical scales and investigate them in trials • Evaluate HD-CAB in a clinical
trial by 2016
• Develop and evaluate a rigorous
HD quality of life measure in a
clinical trial by 2017
Evaluate objective remote sensors • Evaluate sensors (e.g.
wearables, smartphone) in a
clinical study
• Incorporate an objective motor
sensor into a trial each year
• Evaluate new wearable or
portable sensor in clinical trial by
2018
Evaluate biomarkers in clinical trials • Evaluate imaging modalities in a
least one trial per year
• Identify biomarkers that track
with clinical outcomes in a trial
by 2018
Poll HSG members to determine if there is a need for a UHDRS App or online
version for Clinical and Research use
• Develop survey for HSG
members and send out in 1st
Quarter 2016
• Identify and engage developer if
need is identified
• Pilot app in a clinical setting
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10. Sponsors:
Expand capabilities of the research and HSG network
Key Initiative / Action 2015-2019 Timeline / Targets
Enhance the capabilities of existing sites • Education and training for sites
at annual meeting
• Coordinator/site toolkit to be
developed by HSG 2016
Increase the number of HSG sites in North America • Add 2 new sites each year
Develop and launch an HSG Awareness Campaign during HD Awareness Month • Full timeline and deliverables
completed for May 2016 launch
10

11. Sponsors:
Improve efficiency of conducting clinical trials
Key Initiative / Action 2015-2019 Timeline / Targets
Develop and implement a uniform and simplified budgeting process for clinical trials • Collaborate with the CTCC on an
unit costing budget template
• Implement streamlined budget
with the next new trial
Develop a plan to monitor and improve site performance • Collaborate with the CTCC on
identifying key metrics
• Share best practices with sites
• Work with individual sites on
improvement efforts
Simplify processes and procedures with documented SOP’s on file • Develop additional SOPs in 2016
Enhance efficiencies, professionalism, and processes with HSG collaborators
including the coordination center
• Schedule ongoing sessions with
the CTCC
Pilot a Participant Payment system • Identify Participant Payment
System
• Select a current trial site to pilot in
2016
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12. Members
Identify and develop the next generation of investigators
Key Initiative / Action 2015-2019 Timeline / Targets
Identify candidates each year for the Ira Shoulson Scholar award. • Develop application and award a
minimum of two (2) Ira Shoulson
awards in 2016
• Secure additional resources for
future scholars
Provide scholarships to HDSA Human Biology recipients to attend the HSG annual
meeting
• Identify and award 3 HDSA
Human Biology scholarships
each year
Provide scholarships for new members (new investigators, fellows, trainees,
clinicians) to attend the annual meeting
• Award a minimum 8 scholarships
for 2016
• Secure funding for 2016 and
beyond
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13. Members
Build and develop existing human capital
Key Initiative / Action 2015-2019 Timeline / Targets
Identify roles for members to develop professionally including chairing, co-chairing
committees or strategic initiatives and serving on steering committees, DSMBs and
similar roles
• Identify a minimum of 2 members
to serve in various capacities each
year
• Provide four (4) leadership
opportunities per year
Provide training opportunities for our members • Provide GCP, HCP at our annual
HSG meeting each year
• Provide PI training at 2016 annual
meeting
Enhance new membership and credentialing and related processes • Develop comprehensive
membership / credentialing
package, HSGLink, certificate,
HSG Logo use
Launch a Learning Management Platform (LMS) • Identify and purchase LMS
platform
• Launch LMS to HSG members by
2017
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14. Members:
Foster Community
Key Initiative / Action 2015-2019 Timeline / Targets
Recognize outstanding contributions by our members • Annual awards given at the HSG
Annual meeting
 Lifetime Achievement Award
 Outstanding Investigator
Award
 Outstanding Coordinator
Award
• Develop process for identifying
recipients
Develop additional collaborative efforts with partner organizations (e.g. HDSA, CHDI,
EHDN)
• Include Enroll-HD at HSG 2016
Annual Meeting
• Provide updated information for
HD Trial Finder
• Partner with Help4HD, HD
Reach, et al, on novel
recruitment efforts
Host a social event at each of our annual meetings to enable networking and
socialization
• HSG Board of Directors to host a
social event at the HSG Annual
meeting
Participate in MDS, HDSA, EHDN and other meetings to raise HSG awareness and
value
• Develop key collaterals for the
respective meetings / events
• Schedule and budget for
attendance at key meetings
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