Clinical Research Coordinator

The Challenge

Working together, we at Barth Syndrome Foundation (BSF) are making a difference in the lives of children and their families living with Barth syndrome - an ultra-rare, life-threatening genetic condition affecting just 130 children and young adults in the U.S., and approximately 300 globally. One day there will be a cure; until then we hope you will help us garner the necessary support to successfully execute on our mission: Saving lives through education, advances in treatment, and finding a cure for Barth syndrome. Historically, a majority of affected individuals living with Barth syndrome died of heart failure (cardiomyopathy) or infection (neutropenia) by five years of age. Through efforts coordinated by BSF’s Family Services arm, improvements in diagnosis, appropriate medical treatment, and monitoring of symptoms have led to increased survival rates, yet extreme unmet medical need persists throughout the population. In order to meet the needs and challenges faced by our community of affected individuals, BSF’s Research and Development Program is driven to advance treatments, foster collaborative research, and and the scientific ambassadors set to engage the partners essential to achieve our vision of a world in which Barth syndrome no longer causes suffering or loss of life. Since 2002, BSF has awarded 120 research grants totaling $5.85 million USD to 52 institutions around the world, while catalyzing an additional $33 million USD in funding from other agencies towards achieving our mission. Importantly, two clinical trials (one in the US and another in the UK) now have been conducted for possible treatments for our disease, and we await the results. The Barth Syndrome Foundation has been cited as a leader amongst rare disease groups in many ways.  Recognizing synergies between potential industry collaborators and academic early-stage work, we partner across stakeholders in the life sciences to advance a strategic research and development program and advocate for access to therapies with regulatory bodies.

The Role:

BSF is hiring to fill a newly created position to foster and facilitate clinical research efforts across the Barth syndrome (BTHS) field. 

In partnership with BSF’s Executive Team, namely the Director of Research, this role requires you to have the following responsibilities: 

• Serve as the participant-facing project liaison for BSF-supported clinical research efforts, facilitating participant recruitment, engagement, and provision of logistical support
• Support multi-institutional, multi-country clinical research efforts in data collection, sharing, and subsequent return of results and findings to participants
• Managing the engagement and access of novel and external researchers to existing BTHS clinical datasets
• Implement, track, and maintain the Foundation’s Global Unique Identifier program which will span across all competitive and noncompetitive research efforts and assets
• Develop the framework, protocol, and launch of tissue sample and biorepository program for the collection and use of biosamples BTHS research
• Manage the Barth Syndrome Patient Registry, driving registrant engagement, development of surveys and research tools, analysis of captured data, and subsequent communication of findings to the greater BTHS community
• Stay up-to-date on regulatory affairs that intersect with patient engagement in research or the development of treatment guidelines for BTHS 

Experiences, Skills, and Traits:

• Well-versed in data and database management with excellent verbal and written communication skills
• Capable problem-solver with a demonstrated ability to effectively negotiate multiple complex activities
• Excellent project management and time management skills, and ability to adhere to timelines and prioritize and adjust to current and emerging organizational priorities
• Demonstrated track record in relationship-building and maintenance, with the ability to interface with all clinical research stakeholders such as participants, researchers, clinicians, and regulators
• Experience with disseminating risk propensity to patients, research participation education, and navigation of different national health systems desired but not required
• Highly collaborative with the ability to work independently and as part of a geographically dispersed team
• Strong capacity to learn and utilize technical and scientific information needed to advance project goals.
• Working knowledge of the challenges faced by patients/affected individuals in research participation

BSF’s Total Compensation Package

BSF provides a comprehensive and competitive benefits package, encompassing compensation, recognition, and other attractive offerings. Our competitive base salaries are based on or above the midpoint of the market for not-for-profit organizations of comparable size. The anticipated base pay for this position, depending on qualifications, is $62.5k/yr. The position may be a contract role or FTE. 

At BSF we focus on the quality of FTE employees’ contributions, not necessarily on the quantity of time that individuals log. We firmly believe that people do their best work when they are encouraged to have balance in their lives and exercise agency in the conduct of their job-based activities. In addition to being a completely virtual work environment (which we have done successfully for 21 years), BSF offers unlimited vacation time for employees to pursue happiness and health as individuals. Current benefits include a top-tier health care plan to which BSF contributes a generous and set amount. Employees may select more or less robust health care coverage based on their and their families’ unique needs. Our retirement plan offers up to 4% of your salary matched in 401k contributions starting your first full month after you enroll. Staff who are meeting expectations generally receive an annual 2-3% increase and may be eligible for a generous bonus depending on the annual financial and mission-impact achievements of the organization. BSF reserves the right to change benefits at any time.

BSF is an equal opportunity employer and prohibits employment discrimination based on race, color, gender, age, religion, sexual orientation, ethnic or national origin, disability, veteran’s status or any other protected status. We are committed to attracting and retaining professionals who bring diverse perspectives and talents to achieving our mission. Importantly, all BSF employees must be completely bought into our mission and recognize their invaluable role as BSF representatives within and outside of the organization.