Research Data Analyst

Location: Remote

*** Mention DataYoshi when applying ***


Cure SMA leads the way to a world without spinal muscular atrophy, the number one genetic cause of death for infants. We fund and direct comprehensive research that drives breakthroughs in treatment and care, and we provide families the support they need for today.

The position involves working 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 data. EMR data is electronically transferred to populate the CDR. The 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 will include running data quality assurance procedures, using their in-depth understanding of the registry data to conduct analyses and answer questions from stakeholders, and identify additional data to collect from the EHR.

Position is responsible for management of large confidential datasets, and is expected to maintain HIPAA compliance and privacy.

Essential Function/Responsibility with associated competencies

Curate data in CDR, generated in the course of SMA treatment

  • Define quality assurance (QA) procedures and metrics
  • Inspect data in CDR for compliance with QA processes
  • Lead communication with Care Center Network Director and Care Centers to address data anomalies
  • Develop standard operating procedures and manuals of operations for the clinical sites with the Clinical Care Team

Query the CDR data to answer clinical and research questions

  • Translate questions into data queries
  • Produce clean datasets that facilitate analysis procedures that answer the questions

Report meaningful interpretations of clean datasets to relevant stakeholders

  • Determine appropriate analytic procedures
  • Conduct analyses
  • Create meaningful and informative reports and manuscripts for both technical and non-technical audiences
  • Inform Cure SMA Clinical Care team about findings for them to present to others

Other Duties and Responsibilities

  • Develop and maintain understanding of SMA characteristics sufficient to curate, query, and report on the data, by reviewing materials presented by the Clinical Care team
  • Contribute to a positive team dynamic of high-energy collaboration, operational excellence and results focus
  • Perform other duties as assigned.
. Requirements:

Minimum Qualifications

  • Masters in Public Heath, Epidemiology, Social Science, Neuroscience, Genetics Counseling or similar research discipline with significant relevant work experience in large, noisy datasets, and demonstrated success in similar job capacity.
  • At least 3 years of relevant experience, depending on education level. Prior experience working with large databases and clinicians and scientists in an industrial, clinical, or academic setting required. Previous experience with electronic medical records preferred.
  • Experience in quantitative and research methods
  • Able to utilize relational databases of moderate complexity for analysis and reporting
  • Able to build robust data transformations that reduce complexity and increase usability
  • 2 years of work experience using SQL and various statistical and reporting software such as SAS/STATA/R/Python/Excel.
  • 2 years of work experience retrieving and analyzing healthcare and/or clinical data sets
  • Familiarity with FHIR, HL7, CCDA, and other common standards for data sharing
  • Experience manipulating 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.
  • Outstanding written and verbal communication skills.
  • Organized and detail-oriented
  • Able to engage with scientists and clinicians
  • Able to work collaboratively and independently
  • Comfortable with interpersonal engagement
  • Able to efficiently and effectively problem solve
  • Able to take initiative
  • Strong leadership skills and ability to collaborate with others effectively
  • Familiarity with standard medical ontologies and code systems (RXNORM, ICD9/ICD10/ICD0, SNOMED, etc)
  • Sharable code and visualization examples demonstrating technical proficiency (Github, Gitlab, etc)
  • Position is responsible for management of large confidential datasets, and is expected to maintain HIPAA compliance and privacy.
  • Work is generally sedentary in nature, but may require walking, standing for long periods of time, bending, or reaching.
  • Attendance at the 1 week Annual SMA Conference is required
  • Work is generally performed within an office environment with standard office equipment available

*** Mention DataYoshi when applying ***

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