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The Clinical Research Specialist is the Angioma Alliance team member who is able to respond to the request, “Tell us about your members” using data and who will assist an international network of researchers and industry in using this information toward their work for better treatments. More specifically, the position will characterize and communicate the demographic, clinical, and quality-of-life features of the Angioma Alliance research participant pool and assist researchers in using this information for study and clinical trial design.
The Clinical Research Specialist will also be part of the Angioma Alliance recruiting team working to engage members as informed research participants and promoting research participation opportunities.
This is a home-based, hourly position, initially up to 20 hours/week with flexible scheduling and the potential to become full-time. There will be overnight travel 1-2 times/year for research meetings after COVID-19 allows. Travel destinations may have vaccination requirements so candidate must have full COVID-19 vaccination.
Founded in 2002, Angioma Alliance is the only rare disease non-profit serving those with cerebral cavernous malformations, an illness characterized by abnormal blood vessels in the brain that can cause stroke and seizure at any age. While we are patient-led and focused, we are guided by an international Scientific Advisory Board comprised of the world’s experts in the disease.
RESPONSIBILITIES
1. Primary responsibility for recruitment, data administration, and research using the Angioma Alliance Patient Registry, optimizing this tool as a research resource. The Clinical Research Specialist will:
a. Recruit new registrants by maintaining an active social media presence in Angioma Alliance Facebook groups, coordinating messaging with the Angioma Alliance Community Relations Specialist. Maintain Angioma Alliance website pages relevant to the patient registry and clinical research.
b. Review registrant data and contact registrants for clarification. Deepen one-on-one relationships to increase engagement through structured interviews with targeted registrants.
c. Query and analyze patient registry data to form and address research questions, including those that will guide clinical trials. Train researchers on direct use of the patient registry database.
d. Create new surveys in consultation with other stakeholders, including Angioma Alliance staff and outside researchers running IRB-approved studies.
e. Share new research and questionnaires, promote clinical trials and other clinical research opportunities to registrants via e-blasts.
f. Serve as point of contact for the registry platform vendor including troubleshooting and tracking issue resolution.
g. Participate in additional IRB-overseen studies as needed by assisting with protocol and consent development, IRB submission, recruiting, interviewing patients, and compiling and analyzing data. This may require additional training, e.g., Modified Rankin Scale administration, qualitative analysis methods.
h. Participate in researcher-driven co-authorship opportunities.
2. Assist in data acquisition for the IRB-approved Brain Vascular Malformations consortium natural history research project. The Clinical Research Specialist will perform annual update interviews with participants (up to 50 participants) and enter information into NIH database. This requires CITI training which can be completed after hire.
3. Working with the Clinical Programs Director and Industry Relations Director, maximize Angioma Alliance’s access use of claims data to identify high volume providers and understand the patient journey.
4. Assist with sample acquisition logistics and data as needed for the Angioma Alliance biobank.
5. Work closely with researchers and industry as needed to develop recruiting strategies/campaigns and assist with recruitment for outside studiesusing the patient registry, social media, website, and industry marketing resources. This may include multi-center or international recruitment.
6. As part of the Angioma Alliance research recruiting team, assist in creating and disseminating materials to educate the greater Angioma Alliance community about clinical research and trial participation. This may include webinars, videos, patient conference presentations, and printed material.
REQUIREMENTS
1. Bachelor’s degree or higher, preferably in a medical or public health field.
2. Professional level expertise with Excel for data tracking. This is our primary tool.
3. A minimum of 3 years of demonstrated clinical research experience, specifically including clinical data gathering from medical records, qualitative interviewing and data analysis, database management (not programming), survey design, and reporting.
4. Regulatory experience including assisting in writing protocols and IRB submissions.
5. Familiarity with clinical research and clinical trial design.
6. Excellent written communication, active listening, and interviewing skills.
7. Demonstrated ability to work independently and maintain time management, self-direction, and organization. This is a home-based position with a direct supervisor located in Virginia.
8. Demonstrated ability to work as a team member in virtual groups comprised of medical professionals, researchers, and patients.
Job Type: Part-time
Pay: $23.00 – $26.00 per hour
Benefits:
- Flexible schedule
- Paid time off
- Tuition reimbursement
Schedule:
- Day shift
- Monday to Friday
Education:
Work Location: Remote
