Join Our Mission

Patient Registry Manager (part-time, remote)

Join a team that is dedicated to finding a cure for SPS, and join a concerted international effort on the ground floor for this devastating disease.

SPSRF is a patient-driven non-profit organization, launching  the first-ever patient registry and national history study of Stiff Person Syndrome (SPS). SPS is an ultra-rare disease, estimated to affect 1-2 people in a million. There is currently no cure for SPS and treatment options are limited.

The Patient Registry Manager will make a meaningful impact in the lives of patients and their families affected by this disease. The role requires  building the first patient registry, and working closely with patients, patient advocates, researchers, and clinicians in the challenging rare disease space.

About the role

The Registry Manager will lead development and implementation of The SPSRF patient registry and natural history study. The SPSRF registry will collect data from Stiff Person Syndrome (SPS) patients with the ultimate goal of improving care and developing new and better therapies.

Depending on a candidate’s experience and interests, responsibilities can be adjusted to emphasize particular areas for the project. For example, a candidate with extensive survey design experience may be considered for that particular aspect of the position with more contributions expected before the registry launches. Similarly, candidates with no survey design experience but willingness to learn may be more interested in ongoing support, project management, and maintenance of the registry.

Number of hours and compensation will depend on experience and mutually agreed upon engagement.

Role & Responsibilities

  • This position reports to the Executive Director/Founder and will also work directly with The SPSRF Board of Directors and Medical Advisory Board to develop survey goals and timelines
  • Ensure regulatory requirements are met, including: completing R&D and IRB applications, preparing for audits, and reporting protocol deviations
  • Ensure compliance with study protocol, including informed consent, safety, and data security requirements
  • Will lead and supervise other members of the team
  • Serve as a liaison between the key internal and external stakeholders to ensure effective collaboration and to meet research objectives
  • Assist the Patient Advisory Committee in recruiting patients, utilizing the most appropriate promotional or marketing methods, such as individual letters, brochures, and social media
  • Design and oversee the implementation of registry surveys
  • Track and monitor participant recruitment, study/project progress, and data collection activities
  • Perform quality assurance activities for ongoing studies/projects
  • Identify issues related to the registry and propose solutions
  • Prepare reports, presentations, and data summaries
  • Efficiently and independently plan time, meet deadlines, initiate and follow through on tasks to ensure that goals and objectives specified for various programs are accomplished
  • Engage with investigators and research participants requesting information on the repositories
  • Work with the Registry Oversight Board and The SPSRF Board of Directors and Medical Advisory Board to ensure the use of the registry data in meaningful and impactful research

Working Conditions

  • Competitive pay, commensurate with experience
  • Work-from-home
  • Flexible schedule with some on-call responsibilities
  • A bold-thinking, positive, highly motivated team


  • Direct experience leading or managing a Patient Registry is required.
  • BA/BS or higher degree in a scientific- or health-related field and 3-4 years of related work experience in clinical, epidemiological, or health services research (an Associate’s degree with a combination of relevant work and education equaling four years equivalent will also be considered)
  • Rare Disease background preferred
  • Excellent communication and interpersonal skills with the ability to collaborate with a diverse group, including university researchers, industry professionals, patients, and patient advocates
  • Strong attention to detail and organizational skills
  • Solid problem-solving and critical thinking skills
  • Ability to adapt to changing priorities and timelines
  • Proficiency in Microsoft Office and database management
  • Experience with grant writing is a plus

Submission Process

  • Resume, cover letter, references, and salary requirement
  • Applications received without a cover letter will not be considered

Equal Opportunity

The SPSRF 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 SPSRF 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.

Send applications to

We are always looking for volunteers to support the mission of The SPSRF!

Have skills that could help increase awareness of Stiff Person Syndrome and raise funds to research a cure?


Apply Here