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Involvement of Patients and Patient Advocates in Guideline Development and Research: Lessons Learned from the Experience of the Vascular Anomalies Community

• Moderator: Irina Pateva, MD
• Speakers: Marianne Clancy, RDH MPA, Mellenee Finger, Kristen Davis

Vascular anomalies are rare disorders and many patients suffer from chronic debilitating conditions that may require a variety of interventions throughout their lives. Advances in diagnosis and evidence-based therapies have elevated the standard of care for patients with vascular anomalies. Increased collaboration of medical professionals with patients and patient advocacy groups has enriched the experience of designing research studies, defining outcomes and creating clinical practice guidelines. (Ciccarella et al., 2018)

Pediatric Hematologists/Oncologists are increasingly involved in the care of patients with vascular anomalies, as the treatments are becoming more medically based. A multidisciplinary approach, together with advocacy group involvement, has led to creation of diagnostic algorithms and practice guidelines for several rare conditions. We will review recently published guidelines in order to build knowledge and alert our pediatric hematology/oncology colleagues to existing resources both in the medical literature and through patient advocacy groups. We will also discuss the paradigm of empowering patients to be partners with physicians and scientists throughout the research continuum and collaborators for best patient care. Our invited patient representatives are well renowned participants in real time in such initiatives. The knowledge gained will be applicable to other areas of practice within the pediatric hematology/oncology field.

Learning Objectives:

• Highlight recently published clinical practice guidelines for management of patients with vascular anomalies
• Describe the role of patient advocacy groups in the creation of clinical practice guidelines and in research studies
• Review successful outcomes and barriers to collaboration between physician societies and patient advocacy groups

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