The SPARK (Simons Foundation Powering Autism Research for Knowledge) study is the world's largest research study on autism. SPARK aims to accelerate autism research and discovery by building an online research community of thousands of individuals with autism spectrum disorders (ASD) and their family members living in the United States. Participation in SPARK involves contribution of medical and behavioral information online, mailing in saliva for genetic analysis, the option to have genetic findings related to autism returned and consenting to be invited to participate in future research studies. The SPARK community provides researchers with an efficient way to invite individuals to participate in their research. One of the primary sources of recruitment for participation in SPARK is through a network of clinical sites located throughout the country.
Participation in genomic research is unequal among individuals of diverse ancestry
Autism spectrum disorder (ASD) is heterogeneous in causation and behavioral and medical characteristics and affects 1 in 59 children in the United States. While vast progress has been made in the understanding of the underlying genetic basis of ASD, the proportion of research participants who are of non-European ancestry has been lower than that of the US population or the world. As a result, genomic research studies are missing important representation across human genetic variation. Although the current proportion of research participants in SPARK mostly mirror the U.S. population, individuals of African, Asian and Latin American ancestry and indigenous populations are underrepresented. An important goal of SPARK is to better understand the causes of ASD and develop treatments that can improve the quality of life for all individuals with autism and their families. In order to ensure scientific progress can be made equally for all people, SPARK must increase the proportion of underrepresented groups.
Reporting to the Associate Director of SPARK, the Diversity and Inclusivity Outreach Manager will work with the communications and product teams and clinical sites to enhance participation and engagement of families from traditionally underrepresented communities and to raise awareness of the program and its mission. The Diversity and Inclusivity Outreach Manager is responsible for developing and maintaining relationships with national and regional organizations to build bridges to underrepresented racial, ethnic and geographical groups in the United States and establishing best practices for the SPARK study. To the extent possible, he or she will also advise and support local efforts that will often, but not exclusively, include partnerships or collaborations with the SPARK clinical site network.
- Helps develop, implement and evaluate a study-wide strategy for the outreach and engagement of traditionally underrepresented minority communities in SPARK.
- Actively seeks out and builds relationships with national and regional organizations to increase awareness of SPARK and to build a network of support for recruitment efforts.
- Identifies and maintains contact with key influencers who may provide advice to SPARK to ensure ethical and meaningful engagement with research participants.
- Works with clinical sites to develop effective strategies to engage diverse members of the local communities.
- Works with internal staff and consultants to develop plans for sustained involvement with under-represented groups that align with SPARK's overall direction and goals.
- Engages in consistent and regular communication to sustain motivation with potential collaborators via phone, email and in-person visits.
- Works with communications team to develop effective communication, marketing and outreach approaches.
- Travels to regional and national events for outreach and engagement opportunities.
- Bachelor's degree in life sciences, public health or related field
- Master's or a higher degree in a relevant field is preferred
- Five or more years of prior relevant work experience
- Experience with the development of communications plans, including key messaging, value propositions, etc.
- Work with efforts to improve health, equity, justice is a plus
Related Skills & Other Requirements
- Excellent interpersonal skills with all levels of the organization and external communities
- Excellent verbal and written communication skills
- Comfort working independently but also works well as part of the team
- Actively participates in performance-improvement activities
- Demonstrates accuracy and thoroughness while meeting productivity standards
- Strong administrative and organizational skills with attention to detail and ability to balance and prioritize workload under deadlines and multiple commitments
- Strong computer skills, particularly with Google and Microsoft products
Required Application Materials
- Please submit a rsum and cover letter stating your interest in the position.
The Simons Foundation's Diversity Commitment
Many of the greatest ideas and discoveries come from a diverse mix of minds, backgrounds and experiences, and we are committed to cultivating an inclusive work environment. The Simons Foundation provides equal opportunities to all employees and applicants for employment without regard to race, religion, color, age, sex, national origin, sexual orientation, gender identity, genetic disposition, neurodiversity, disability, veteran status or any other protected category under federal, state and local law.