• admin | March 24, 2021

    The patient registry, or natural history database, coming in 2016, will allow patients to report data spanning symptoms, demographics, treatments, and more. MPNRF is seeking to add to our small but mighty team by recruiting for a newly created role: the Registry Manager. 

    Reporting to the Executive Director, the Registry Manager will contribute to the development and implementation of the MPNRF Patient Registry, launching in late 2016. The successful candidate will be a goal-oriented, responsive, enthusiastic project manager who looks forward to the challenge of working for a neglected patient population through research. You should be equally comfortable working with patients and researchers and enjoy multi-faceted work that can find you on a computer all day one day and on the phone the next. An ideal candidate is self-motivated and excited to have a role at the ground floor of what will be a vital research tool for people living with blood cancer.


    ● Minimum 2 years’ experience working with patients in some capacity.

    ● 2 years’ experience with data management.

    ● Proficiency in Excel and XML.

    ● 2 years’ experience working as a team leader or in a project manager capacity.

    ● Degree in nursing, database management, public health or closely related field is encouraged.

    ● Minimum of 2 years’ experience in a health related field.

    ● Previous experience with patient registries, clinical research, and/or outcomes research highly desirable.

    ● 2 years’ experience grant writing.


    ● Work closely with the ED and advisory committees in launching the registry, including creating, refining and implementing the survey and establishing the protocol.

    ● Serve as primary liaison to registry platform service provider, marketing firm developing registry communications plan, clinicians and researchers.

    ● Lead the marketing and recruitment efforts for the registry.

    ● Be willing to travel to clinical sites on behalf of the registry.

    ● After launch, prepare periodic reports on progress of the registry.

    ● After launch, stay on top of outcomes research trends generally, and trends in myeloproliferative neoplasms research specifically.

    ● After launch, serve as point of contact for all inquiries related to data requests, questions about the survey, questions about the protocol and patient or service provider inquiries about the registry.

    ● Assisting with funding acquisition from a variety of sources (individuals, industry, government, foundations).


    ● Exceptional verbal and written skills.

    ● Ability to communicate effectively with a variety of constituents.

    ● Enjoyment of wearing many hats.

    ● Enjoyment of working with people.

    ● Assertive and independent but also a team player.

    ● Flexible mindset.

    ● Competence discussing medical histories and research with both a professional and lay audience.

    ● Conversant in cancer research issues and terminology, particularly related to blood cancers.

    MPNRF is an equal opportunity employer. We enjoy a close knit and diverse work environment in which all people are welcome. This position, like our registry project, is in its nascent stages, and flexibility is a must. Someone willing to grow with the position would be ideal. We welcome applicants who are looking for flex time or partial work from home opportunities who have the experience, qualities and passion we are seeking. Our compensation package includes competitive pay depending on experience and hours, vacation, compensation for insurance, IRA.   

    If interested send your cover letter and resume to