Patient Registry Coordinator

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The Raymond A. Wood Foundation (RAWF) is hiring a part-time Patient Registry Coordinator to help the building and growth as well as manage the day-to-day activities of the first international patient registry for hypothalamic-pituitary brain tumors. The registry will be hosted on the National Organization for Rare Disorders (NORD) platform. The goal of the registry is to create an international central repository of caregivers/ patients entered data about living with hypothalamic-pituitary tumor syndromes in the short term with the ultimate aim of improving care and developing new and better therapies. You will join a passionate team who strives to make a meaningful impact in the lives of patients and their families affected by these diseases.


The Registry Coordinator will work closely with the Scientific Advisor, the Registry Board and the RAWF team to manage the day-to-day activities of the registry.

Specific Duties & Responsibilities include:

  • Support and manage data collection
  •  Support creation and implementation of surveys
  • Support data analyses
  • Perform data cleaning and curation
  • Support the development of a quality assurance process
  • Support members of the registry advisory board and attend meetings
  • Ensure regulatory requirements are met
  • Create datasets for analysis by other investigators, and the patient community.
  • Ensure compliance with study protocol, including informed consent, safety, and data security requirements.
  • Track and monitor participant recruitment, study/project progress, and data collection activities.
  • Create tables and figures in publication-quality form summarizing the results of statistical analyses
  • Write detailed documentation/specifications for analysis data sets and related files
  • Support outreach and communication efforts to promote the registry to clinicians, patients, caregivers and other stakeholders
  • Efficiently and independently plan time, meet deadlines, initiate and follow through on tasks to ensure that goals and objectives specified for various programs are met
  • Attend staff meetings and provide updates on status of projects


  • BA/BS or higher degree in a scientific- or health-related field and 3-5 years of related work experience coordinating or managing robust interactive database systems.
  • Experience in project management
  • Proven ability to successfully manage database projects on time
  • Excellent communication and interpersonal skills with the ability to collaborate with a diverse group, including university clinicians, industry professionals, patients, and patient advocates.
  • Strong attention to detail and organizational skills
  • Ability to adapt to changing priorities and timelines
  • Proficiency in Microsoft Office and database management
  • Previous experience working with patient registries is preferred
  • Good Clinical Practice and regulatory knowledge would be a plus

Working Conditions:

  • Number of hours and compensation will depend on experience and mutually decided upon engagement
  • Remote

Submission Process

Interested candidates should send Resume and Cover letter to

Applications received without a cover letter will not be considered.

Equal Opportunity

The RAWF is committed to equal opportunity. We value and embrace diversity and inclusion of all team members, and do not discriminate on the basis of race, religion, color, national origin, sex (including pregnancy, childbirth, or related medical conditions), sexual orientation, gender, gender identity, gender expression, transgender status, sexual stereotypes, age, status as a protected veteran, status as an individual with a disability, or other applicable legally protected characteristics. Even if you feel you don’t meet every requirement, consider applying! The RAWF acknowledges the research which shows that women and people of color are less likely to apply for jobs when they don’t meet all of the stated qualifications. However, we’re looking for an organized team player with a passion for improving patients’ lives and you just may be the right person for this role.