Best Practices for Study Recruitment Emails
This guidance is grounded in feedback from individuals with lived experience of frontotemporal degeneration (FTD), including Registry participants and care partners, who have shared what helps them feel respected, informed, and more likely to participate in research. Effective and respectful communication is essential to encouraging engagement. The language used in recruitment emails should reflect the diversity of the FTD community’s experiences and emphasize clarity, respect, and empowerment.
1. Use Person-Centered Language
- Refer to individuals as participants, individuals living with an FTD disorder, or people diagnosed with frontotemporal degeneration.
- Use care partner instead of caregiver to reflect a more collaborative and less clinical role.
- When referring to those with a diagnosis, avoid language that implies they are unable to contribute directly. Many people in the FTD disorders community are active decision-makers and can provide informed consent and thoughtful responses.
Avoid:
"We are seeking caregiver responses, as individuals with dementia may not be able to complete this survey."
Instead say:
"We welcome responses from individuals diagnosed with frontotemporal degeneration and care partners. Participants may choose to complete the survey themselves or with assistance."
2. Avoid Assumptions About Ability
- Recognize that Registry participants are at all stages of diagnosis. Do not presume limitations in capacity or understanding.
- Provide options and guidance for those who may need assistance, without excluding those who do not.
Example:
"You may complete this survey on your own or with the help of a care partner."
3. Use Respectful and Accurate Terminology
- Say frontotemporal degeneration (FTD) instead of frontotemporal dementia to reflect the broader spectrum of disorders under the FTD umbrella and to align with the preferred terminology of Registry participants.
- Use plain language where possible and avoid overly clinical or technical jargon.
4. Write with Clarity and Purpose
- Be concise and direct about what the study involves, how participation helps, and what is required.
- Avoid contractions to improve formality and clarity for all reading levels and assistive technologies.
Example:
"You will be asked to complete a 15-minute online survey about your experiences. Your input will help researchers better understand the needs of people living with FTD disorders and their families."
5. Convey Respect and Appreciation
- Acknowledge the time, effort, and lived experience that participants bring to the research process.
- Be transparent about the purpose of the study, data use, and any compensation, if applicable.
Example:
"We value your insights and thank you for considering participation in this study. Your contribution will help drive progress toward better understanding and treatment of FTD disorders."
Recruitment emails are often the first point of contact between researchers and potential participants. Taking care to use thoughtful, respectful language helps foster trust and demonstrates a commitment to partnership with the FTD community. By centering lived experience, using clear terminology, and avoiding assumptions, researchers can create a more welcoming and empowering invitation to contribute to scientific progress.
PARTNER WITH US
Contact the Registry Director at director@FTDregistry.org to learn more about research partner opportunities.
Connect with Others
Spread the word about the FTD Disorders Registry. We have a toolkit of social media and information brochures available.
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