The Community Research Project Manager provides critical, multi-faceted support to PPMD’s Vice President of Community Research & Genetic Services and PPMD’s Director of Community Research & Genetic Services. This individual is responsible for the daily curation duties of the Duchenne Registry, as well as supporting the daily operations of the Decode Duchenne genetic testing program. Providing genetic counseling to Duchenne and Becker families via non-traditional methods (phone, zoom, email) is also a core responsibility of this individual. Opportunities for involvement in other projects related to genetic counseling and education are abundant.
Dividing their time between supporting key Registry and care projects, the Community Research Project Manager contributes to the Research and Care teams’ efforts to advance research in the Duchenne and Becker field and improve care for all patients.
This individual regularly accesses highly confidential and sensitive information and interacts with a diverse group of individuals within PPMD and outside of the organization, including patients and families, clinicians, researchers and industry representatives. It is imperative that they maintain discretion, confidentiality and professionalism in the performance of the position’s duties. Thoughtful, independent judgment is required to plan, prioritize and organize tasks, and recommend changes in practice or procedure.
Review new Registry accounts for completion and consistency and email each new registrant
Assign a Clinical Verification and Genetic Verification Status as outlined by the TREAT-NMD guidelines
Interact on a regular basis with our Registry platform vendors, THREAD Research and Prometheus Research
Genetic Test Report Curation
Interpret genetic test reports and enter data into the Genetic Test Curator form (enables searching and exporting of genetic test data)
Complete data integrity tasks as required, such as combining duplicate accounts, reviewing inactive accounts and reassigning correct Clinical Verification codes
Decode Duchenne Genetic Testing Program:
Process incoming applications/emails/phone calls, act as liaison to PerkinElmer Genomics Laboratory, and handle incoming results
Marketing & Reporting
Assist with marketing of program to patients and healthcare providers and reporting back to industry sponsors (Joint Steering Committee)
Help triage and reply to emails received at the coordinator email address and phone calls received to Registry/Decode extensions (these include Registry and Decode questions as well as questions regarding genetic counseling issues, care concerns, and clinical trials)
Promotion of PPMD Programs
Represent PPMD at relevant conferences and advocate for the Duchenne Registry, Decode Duchenne and PPMD’s many other programs
Assist with additional projects as assigned, including but not limited to PPMD’s research, care and education initiatives
Master’s degree in Genetic Counseling
Board eligibility/board certification
Skills and Competencies
Proactive, self-starter with ability to work independently with moderate supervision
Strong administrative, organizational, and detail-oriented skills
Excellent written and verbal communication skills with the ability to tailor complex information in a simple, relevant way for a broad range of audiences (patients, clinicians, researchers)
Strong interpersonal skills including a professional, collegial and collaborative demeanor to interact effectively with internal teams and external partners
Flexible, “can-do” attitude and ability to pivot quickly and seamlessly between projects
Ability to handle multiple competing assignments and deadlines effectively and efficiently
Proficiency in Microsoft Office suite (Word, Excel, PowerPoint)
Absolute adherence to standards of confidentiality, discretion and ethical conduct
Understanding and empathy for families in the Duchenne/Becker community and a passion for the PPMD mission
Experience in genetic counseling, specifically in the neuromuscular field
Knowledge of the natural history of Duchenne/Becker
Experience with registry and/or database management
Parent Project Muscular Dystrophy (PPMD) fights to end Duchenne. We accelerate research, raise our voices to impact policy, demand optimal care for every single family, and strive to ensure access to approved therapies.
PPMD is proud to have played a vital role in every single victory against Duchenne since 1994 and our compassion, strength, and innovation continue to lead this community.