Job details
Job type full-time
Full job description
Description:
Cure sma leads the way to a world without spinal muscular atrophy, the number one genetic cause of death for infantsWe fund and direct comprehensive research that drives breakthroughs in treatment and care, and we provide families the support they need for todayThis position is considered remote with the option to be hybridOccasional travel with flexibility to meet onsite / in-person on a limited basis, as required.
Reporting to the director, research data analytics, the senior manager, clinical registry analytics, partners with the chief medical officer and clinical care team to curate a rare disease, spinal muscular atrophy clinical data registry (cdr) that utilizes electronic medical record dataEmr data is electronically transferred to populate the cdrThe goal of the cdr is to utilize clinician data to identify best practice and create guidelines that will optimize the standard of care for individuals with spinal muscular atrophy (sma)In addition, data will be used to monitor the changing phenotype of sma.
Responsibilities include:
1Leading the cdr analytics program including running data quality assurance procedures, using in-depth understanding of the complex medical information contained in the cdr to conduct analyses and answer questions from stakeholders, and identifying additional data to collect from the ehr.
2Ensuring quality and coordination of data collection from entry, data submission, report, preparation and presentation of data for data sharing and improvement initiatives, benchmarking and outcomes research.
3Educating end users about technical solutions and process requirements, identifying knowledge gaps and actively building knowledge in others.
4Participating in organization compliance and security oversight;
5Managing external database vendors.
Essential function/responsibility with associated competencies.
1Curate data in cdr, generated in the course of sma treatment
Define quality assurance (qa) procedures and metrics to improve accuracy and reliability of data.
Inspect data in cdr for compliance with qa processes.
Lead communication with care center network staff and care centers to troubleshoot data anomalies.
Develop standard operating procedures and manuals of operations for the clinical sites with the clinical care team.
2Report meaningful interpretations of clean datasets to relevant stakeholders
Write appropriate statistical analyses plan.
Query and analyze cdr data to answer clinical and research questions.
Create meaningful and informative reports and manuscripts for both technical and non-technical audiences.
Present data internally and externally.
Identify innovative ways and strategies to use cdr data for organization goals and community needs to track and understand the changing sma landscape.
Serve as the liaison with the care center network it departments to find and implement the best technological solutions for cdr reported data.
Collaborate with research data analyst to optimize data reporting regarding sma patients across cure sma data investments.
3Compliance
Participate in compliance oversight of organization.
Serve on internal compliance committee.
4Manage external vendors to support the cdr
Manage relationship with platform partner and other vendors as applicable.
5Other duties and responsibilities
Develop and maintain understanding of sma characteristics sufficient to curate, query, and report on the data.
Contribute to a positive team dynamic of high-energy collaboration, operational excellence and results focus.
Perform other duties as assigned.
Requirements:
Master`s in public heath, epidemiology, biostatistics, informatics, or similar research discipline with significant relevant work experience and demonstrated success in similar job capacityAt least 4-6 years of relevant experience, depending on education level; or equivalent combination of education and experience is requiredPrior experience working with large registries and clinicians and scientists in an industrial, clinical, or academic setting requiredPrevious experience with electronic medical records preferred.
Competencies required:
Knowledge of data management, research design, and current analytical/statistical methods.
A high degree of analytical expertise, and the ability to use substantial independent judgment when applying technical concepts and methodologies.
4 years of work experience using various statistical and reporting software such as sas/stata/spss/r/python/sql/excel.
2 years of work experience retrieving and analyzing healthcare and/or clinical data sets, including hipaa data.
Familiarity with fhir, hl7, ccda, and other common standards for electronic medical record (emr) data sharing.
Experience manipulating and coding data for research analysis, responding to technical data requests.
Excellent understanding of statistical concepts and fluency in analytical approaches for health care outcomes.
Identify trends and performance levels for metrics based on established benchmarks or creates benchmarks using standard or customized approaches.
Able to prioritize, schedule, and monitor multiple projects.
Able to establish strong collaborative relationships and work with others in a cooperative and effective manner.
Strong written and verbal communication skills.
Organized and detail oriented.
Able to engage with scientists and clinicians.
Strong leadership skills and ability to work collaboratively and independently.
Comfortable with interpersonal engagement.
Able to efficiently and effectively problem solve.
Able to take initiative.
Knowledge of clinical & electronic health records (ehr) workflow, including knowledge of expected data elements and categories.
Familiarity with standard medical ontologies and code systems (rxnorm, icd9/icd10/icd0, snomed, etc.).
Works under general supervision while planning own work with authority to exercise independent judgment with respect to matters of significance.
Position is responsible for management of large confidential datasets and is expected to maintain hipaa compliance and privacy.
Attendance at the 1-week annual sma conference is required.
Come join our team! please apply with a cover letter and resumePlease direct any questions to human.resources@curesma.org
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