Partnering With Pharmaceutical and Biotechnology Companies to Find a Cure for Kennedy’s Disease
Meaningful Patient Engagement that Brings the Voices and Perspectives of the Kennedy's Disease Community into Research and Clinical Development
KD Voices is a coalition of patients and care partners who are willing to share their lived experiences and perspectives with pharmaceutical and biotechnology companies, researchers, and other organizations working to develop therapies and find a cure for Kennedy’s Disease.
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Connecting Pharmaceutical and Biotechnology Companies with the Kennedy’s Disease CommunityKD Voices provides pharmaceutical and biotechnology companies with a structured, coordinated way to engage directly with members of the Kennedy’s Disease community. Engagement opportunities may be broad or highly specific, depending on the needs of your organization.
Community Perspectives
KD Voices can support organizations seeking community perspectives related to:
- Clinical trial design and planning
- Patient priorities and unmet needs
- Clinical trial participation
- Patient recruitment and retention considerations
- Patient-facing communications
- Educational materials
- Research concepts
- Quality-of-life considerations
- Other patient and caregiver engagement needs
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Organizations can help ensure their research reflects the real-world experiences of people living with Kennedy’s Disease.KD Voices brings together people affected by Kennedy’s Disease and partners across the pharmaceutical and biotechnology community to ensure meaningful patient perspectives help inform research, clinical development and the path toward new treatments.
Why Partner with the KDA?
Developing a Treatment for Kennedy's Disease is a Complex Process
A clinical trial requires not only rigorous research and scientific expertise, but also an understanding of the people who will ultimately use and live with the therapies being developed. People affected by Kennedy’s Disease have a unique and valuable perspective and can help shape research and therapy development by sharing their priorities, concerns, challenges, and any unmet needs.
KD Voices volunteers will help ensure that the needs and priorities of the KD community are considered throughout the research and clinical development process, and help accelerate the development of effective therapies for Kennedy’s Disease.
Partnering with the KDA can provide organizations with:
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Authentic Patient & Caregiver InsightsHear directly from people living with Kennedy’s Disease and those who care for them.
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Patient-Centered Research Perspectives
Bring real-world lived experiences and priorities into research and clinical development discussions.
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Clinical Trial Insights
Gain a better understanding of potential barriers, concerns, and considerations from the patient and caregiver perspective.
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Constructive Feedback
Obtain meaningful feedback on materials, concepts, and communications intended for the KD community.
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Coordinated Engagement
The KDA manages participant recruitment, training and preparation, and meeting support to make patient engagement more efficient and effective.
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Connection to the KD Community
Build meaningful relationships with a highly engaged global rare disease community.
KD Voices Engagement Opportunities
Engagement Opportunities to Meet the Needs of Your Organization
The KDA can tailor engagement opportunities to meet the needs of each organization:
- Focus groups
- In-person and virtual meetings
- One-on-one consultations with KD Voices volunteers
- Surveys
- ... and more!
Partnering with KD Voices
KD Voices volunteers are expected to share their lived experience with KD, including how the disease affects their daily lives and quality of life. Volunteers are not expected to share clinical or other personal health information. Depending on the nature of a specific engagement, volunteers may be asked to share limited information such as their year of diagnosis or CAG repeat number.
The KDA charges pharmaceutical and biotechnology companies a fee to engage with KD Voices volunteers. The KDA encourages companies engaging with volunteers to provide appropriate compensation for their time, as well as reimbursement for reasonable travel and related expenses.
About KD Voices Volunteers
The Goal of KD Voices is to Provide Patient Perspectives to Companies Interested in Developing Therapies for Kennedy’s Disease
The KDA's diverse group of volunteers collectively represent the breadth of experiences within the Kennedy’s Disease community. Participant volunteers will be selected to demonstrate the variety of manifestations of Kennedy's Disease in patients with established symptoms as well as the varying (and typically increasing) burden of care for partners and family members.
KD Voices Begins in the U.S. and Canada, With the Global Kennedy’s Disease Community to Follow
KD Voices volunteers acknowledge that participation in KD Voices is not a requirement to participate in a clinical trial and does not guarantee that a volunteer will be eligible for or offered participation in a clinical trial.
KD Voices volunteers are expected to meet the following program requirements:
- Commit to a three-year term, including availability for consultations with KDA and pharmaceutical and biotechnology companies as opportunities arise.
- Share their lived experience and perspectives constructively and participate as part of a diverse group of patients and care partners.
- Complete required training and communicate effectively in English.
- Sign a commitment letter outlining participation expectations and non-disclosure agreements (NDAs) when required for specific engagements.
Committed to Ensuring Participants are Prepared to Engage Confidently and Constructively
The KDA Board of Directors will provide oversight and direction to the selected volunteers, conduct annual training, and manage interactions with industry partners. Participants will develop a basic understanding of research and clinical development, and must be willing to listen to and communicate constructively with patients, care partners, healthcare professionals, researchers, and industry representatives.
