CLARUM Lymphatic Anomalies/Malformations Community Partner Voices

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We aim to better understand key issues that impact the experiences of patients and their caregivers with primary lymphatic anomalies:

  • Awareness about primary lymphatic anomalies
  • Barriers to diagnosis and treatment
  • Challenges and hurdles of genetic testing
  • Patient and provider education
  • Insurance and cost considerations

Your insights are very valuable and can help improve the future diagnosis and treatment of patients with primary lymphatic anomaly/malformations.

We are seeking community partners

  • Lymphatic Anomaly/Malformation Patients (Ages 18+)
  • Caregivers ages 18+ of lymphatic anomaly patients of any age (Parents, Spouses, Guardians, & Siblings)
  • Providers (Clinicians, Genetic Counselors, Nurse Practitioners, Therapists, others)

This study has two optional parts:

  1. A brief 15–20 minute anonymous online survey
  2. A 60-minute virtual interview with a clinical psychologist and patient advocate.
    If interested in an interview, please email CLARUM_discoveryduo@cumc.columbia.edu or complete the screener survey.

Columbia University and Children’s Hospital of Philadelphia are conducting this study on behalf of ARPA-H, a federally funded NIH agency that supports innovative research programs to help drive biomedical and health breakthroughs.

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