Duties: Orphan diseases represent a collection of disorders that afflict fewer than 200,000 individuals for any single disease type, yet there are more than 7,000 distinct orphan diseases. The Orphan Disease Center (ODC) in the Perelman School of Medicine was founded in 2011 to promote and fund research in rare diseases globally, beyond Penn, making a difference for these under-served patient populations. A unique aspect of ODC is that it is a 'Center without walls' which sources and contributes to developing transformative therapies through the use of platform technologies and of research strategies that can be deployed across multiple rare disease programs. The main feature is a pilot grant program which provides $8M annually to over 35 global institutions.
The ODC has launched a new initiative to build a suite of rare disease patient registries using cloud-based technology. Our registries collect real-world demographic, clinical, and laboratory data in addition to patient (or caregiver) reported outcomes from patients with rare diseases. Data is securely collected through online portals, centralized, and de-identified for use by the broader scientific community. The data collected in these registries is essential for understanding rare diseases and accelerating the development of new treatments.
The ODC is building a Registry Data Architecture team, and we are looking for a Data Manager to aid in the acceleration of deployment and innovative use of these registries for clinical development supporting an international community of rare diseases.
As the Data Manager, you will contribute to and lead efforts regarding the development, implementation, and continued support of 1-5 disease-specific registries. You will work with our platform partner to design the database as well as a diverse group of external partners to understand how best to facilitate data collection. You will interface both internally through a matrix environment and externally with our informatics partner, and you should be comfortable working with scientists, clinical researchers, patients, and software developers. You will provide support on all the stages of database implementation and database related deployments. You will administer ongoing performance monitoring and production support related to the databases in coordination with our external informatics and database partner. You should have the statistical or epidemiological expertise and have experience with clinical study design, clinical research, or clinical databases.
Joining the ODC offers you with unique opportunity to contribute to revolutionizing the practice of medicine for these under-served patient groups.
Qualifications: * Bachelor's degree in a scientific or technical discipline (computer science, biology, public health, etc. or demonstrated professional experience preferably with data, analytics, software, or other related technical discipline) and 2+ years related work experience with database management, preferably in the context of human-subject research (academic, industry, or relevant clinical research organization) or an equivalent combination of education and experience required.
* Preferred Masters of Science in Biostatistics, Epidemiology, or other related field
* Excellent organizational skills and attention to detail
* Self starter but also a strong desire to contribute and work collaboratively to achieve goals
* Highly functioning, detail-oriented, and analytical candidate who can apply statistical and mathematical analysis to identify trends, solve complex analytic problems, and optimize data interoperability.
Reference Number: 40-28027
Salary Grade: C
Employment Type: Exempt
Org: OD-Center for Orphan Disease Research and Therapy
Job Family: E-Information Systems/Technology