Clinical Research Network Assistant

Reports to:
Director, RARE-X Research Program




Are you passionate about the power of data to transform biomedical disease understanding, research, and medicine development? Are you an organized individual who has a scientific mind who excels at process implementation? Are you detail and process-oriented with the ability to think creatively and be flexible to stakeholder needs? Are you a clear and empathetic communicator? We seek a Clinical Research Assistant to support the Sr. Director, RARE-X Research and collaborators in the Global Genes: RARE-X Clinical Research Network Program efforts.

Global Genes’ mission is to enable and empower rare disease patients and advocates. RARE-X is a Global Genes program focused on supporting the acceleration and development of life-altering treatments and future cures for patients impacted by rare diseases. Enabled by best-in-class technology, patients, researchers, and partners, RARE-X will support patients and advocates to gather structured, high-quality, standardized data to share broadly, benefitting from 21st -century governance, consent, and federated data sharing platform technology. RARE-X intends to build the largest collaborative patient-driven, open-data access platform for rare diseases globally.

The Clinical Research Network Assistant role is to be a trusted and valuable partner to our stakeholders and internal team. The right candidate will support the RARE-X team’s relationships with the RARE-X Clinical Research Data Collection Program and communicate effectively with internal and external clinical research teams, serving as a key part of our program execution process. We are looking for a team member who shares our affinity for
organization and is motivated by the Global Genes mission, delivering value to our patient communities and partners.


Duties and responsibilities include but are not limited to:

  • Supporting the Principal Investigators and Clinical Director(s) in facilitating monthly calls.
  • Be the key point person and have a working knowledge of current data collection efforts.
  • Assist in the creation of template agreements/contracts/processes towards a flexible and scalable model that can be deployed at additional clinical sites.
  • Supporting the RARE-X database entry, training, data quality, and other activities related to the RARE-X database.
  • Liaising with clinic coordinators, clinicians, and advocacy and industry partners when needed
  • Participate in recruitment efforts for data collection.
  • Biobank sample inventory coordination with patients for sample collection and tracking
  • Engage with families and understand their concerns regarding clinical research visits.
  • Determine study eligibility; consent and enroll patients both in-clinic and via project web-based registration system; data tracking and management.
  • Support maintenance of IRB requirements.
  • Interact with the study team, clinic staff, and patient support groups.
  • Facilitate project start-up at other sites.
  • Coordinate project meetings and conference calls.
  • Assist in all aspects of the Clinical Research Network Program operations, including requirement definition and quality assurance.
  • Other duties may include managing clinic contact lists.


  • BA or MA in social sciences, public health, or related field.
  • A minimum of 2-3 years of experience in epidemiology or clinical research is required, including familiarity with IRBs.
  • Experience in patient/participant communications is preferred.
  • Willingness to continually self-educate.
  • Excellent data management skills; experience with databases preferred. The ability to quickly learn our database management software is required.
  • Extremely independent and mature; excellent interpersonal, communications, and organizational skills required.
  • Excellent written, verbal, and interpersonal skills
  • Must possess the ability to stay organized, manage multiple tasks, and meet and set deadlines within a complex and semi-remote team environment are required.
  • Ability to operate as an effective tactical as well as a strategic thinker and make recommendations for the most effective operating of the Clinical Research Network Program.


  • Hours: 40 hours per week, The daily schedule can vary based on project priorities and organizational needs.
  • Remote: The Global Genes headquarters team is located across the United States and all meetings are remote. Travel may be required.
  • Compensation Range: $50,000 to $65,000 (exact salary will be dependent on experience)
  • Comprehensive benefits including health, dental, vision and ancillary insurance offerings, 401(k), paid time off, etc.

We appreciate all interest however, we will only respond to those individuals with whom we have a further interest. Global Genes will be accepting applications for this position through Jul 30, 2023.

Global Genes is an Equal Opportunity Employer committed to diversity in the workplace.

The statements herein are intended to describe the general nature and level of work being performed by employees and are not to be construed as an exhaustive list of responsibilities, duties, and skills required of personnel so classified. Furthermore, they do not establish a contract for employment and are subject to change at the discretion of the employer.

Last Revised Date: July 2023