The Kennedy’s Disease Association (KDA) is forming a global network of volunteers to participate in KD Voices, a new initiative that will give patients and care partners an opportunity to share their lived experiences and perspectives about Kennedy’s Disease directly with pharmaceutical and biotechnology companies developing potential therapies and conducting clinical trials.

KD Voices Begins in the U.S. and Canada, With the Global Kennedy’s Disease Community to Follow

To express your interest in participating, please complete this short questionnaire.

With gratitude,

The Kennedy’s Disease Association
Board of Directors

Please note: Completing this questionnaire does not commit you to participating in KD Voices. The questionnaire will help us learn more about your interest and identify 15-20 volunteers who may be a good fit for this initiative. Participation is voluntary. Please allow 15 minutes to complete the questionnaire.
PERSONAL INFORMATION

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Name (Required.)

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Address

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Phone (Required.)

CONNECTION TO KENNEDY'S DISEASE/SBMA

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Please share your connection to Kennedy’s Disease/Spinal and Bulbar Muscular Atrophy (KD/SBMA), including whether you are a person living with KD or care partner.

BACKGROUND

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Please briefly tell us about yourself, including any experiences, interests, skills, or perspectives you feel would be relevant to your participation in KD Voices. (2–4 sentences)

PREVIOUS INVOLVEMENT

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Please describe any previous involvement you've had with KD Voices or any other Kennedy's Disease/SBMA-related advisory groups, advocacy initiatives, research programs, or similar organizations, if applicable.

RESEARCH AND CLINICAL TRIAL EXPERIENCE

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Please describe any experience you've have with medical research or clinical trials, including as a participant, patient or care partner. Please provide details about your experience, if applicable.

PARTICIPATING IN KD VOICES

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If selected to participate in KD Voices, are you willing to sign a commitment letter agreeing to participate for a three-year term?

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If selected to participate in KD Voices, are you willing to sign a liability release form as part of informed consent to participate?

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During your participation in KD Voices, you may be exposed to confidential or proprietary information shared by pharmaceutical and biotechnology companies. If required, are you willing to sign a non-disclosure agreement (NDA) and keep such information confidential?

PHOTO (OPTIONAL)

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If you are comfortable doing so, please upload a recent photo of yourself.

NEXT STEPS
Thank you for completing the questionnaire to express your interest in participating in KD Voices.

Your information will be reviewed by the KDA Board of Directors, and if selected as one of the 15-20 volunteers, you will be added to the KD Voices communication list so we can keep you informed about upcoming opportunities and next steps.

If you have any questions or need additional support, please contact us. We appreciate your interest in helping bring the voices and perspectives of the KD community to the development of future therapies.

Lew Myers: lmyers@kennedysdisease.org
Eric Park: epark@kennedysdisease.org

Kennedy's Disease Association

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