Survey Data: Rare Cancer Education Needs
NORD and Medlive surveyed U.S. oncologists actively treating rare cancer patients, asking what topics, formats, and channels would genuinely help them serve patients better.
Here’s what we found…
SURVEY DATA
Treatment selection and sequencing tops oncologists’ education priorities in rare cancers.
56% of oncologists surveyed rank it as a top priority for further education.
% of Oncologists "Very Interested" by Topic
- Treatment selection & sequencing 56%
- Emerging therapies 50%
- Molecular/genomic testing 50%
- Clinical trials 46%
- Diagnosis & recognition 42%
- Multidisciplinary Care 38%
- Supportive/palliative Care 34%
- Adverse Event Management 32%
Key insight
As Treatment Options Multiply, So Does the Desire for Guidance
Treatment selection and sequencing, emerging therapies, and molecular/genomic testing occupy a single phase of the care continuum: post-diagnostic treatment planning. This phase has become more complex as the therapeutic landscape has expanded. The ranking reflects a corresponding demand for education on comparative treatment selection and sequencing methodology.
Interest in Diagnosis Content Holds Steady
Oncologists remain interested in diagnosis and recognition content across confidence levels. That consistent interest, paired with a 50% confidence gap, points to a real and ongoing need for this content.
50%
Somewhat or not confident
The percentage of oncologists that rate themselves “somewhat” or “not” confident recognizing a rare cancer when they see one.
Stated interest in diagnosis & recognition content
average rating on a 0–4 scale, by confidence group
- Somewhat / not confident 3.16
- Confident 3.44
01234
not at all interestedvery interested
“Oncologists want education that helps them recognize rare cancers and make informed treatment and genomic testing decisions. Education should address the full clinical journey, from diagnosis and recognition through treatment selection and testing.
— Katie Kowalski, Associate Director of Education, National Organization for Rare Disorders (NORD)
IN THEIR OWN WORDS
Themes from open-ended responses
Q: What rare cancer topic would you like additional education on?
- 33%Specific rare cancer subtypes
- 27%Diagnosis, workup & treatment sequencing
- 22%Emerging therapies & mechanisms
- 14%Hereditary risk & molecular testing
EMERGING THERAPY INSIGHTS
Newer Mechanisms, Lower Confidence
Q: Which categories of emerging or recently introduced therapies for rare cancers are you least confident discussing with patients and caregivers?
- Gene-replacement therapy 64%
- Gene-editing therapy 60%
- Oncolytic viral therapy 54%
- RNA-based therapy 54%
- CAR-T & cell therapies 40%
- Precision therapy 36%
- Bispecific antibodies 34%
- Antibody-drug conjugates 30%
- Checkpoint inhibitors 28%
- Combination approaches 26%
- Small-molecule therapy 24%
0%70%
Respondents could select multiple categories; percentages do not sum to 100%.
Key insight
The Newest Therapy Classes Need Foundational Education
When we asked which emerging rare cancer therapies oncologists feel least confident discussing with patients, the four mechanisms they named most are also the newest to oncology practice. Gene-replacement, gene-editing, oncolytic viral, and RNA-based therapies need foundational, category-level education so clinicians can make an informed decision as the evidence on each one develops.
WHO THEY TRUST
Why the Messenger Matters
- 82%of oncologists treating rare cancers trust their medical association or professional conferences for clinical information
- 62% trust their peers or KOLs for clinical information
Key insight
Medical Society Partnerships Build Credible Education
92% of oncologists treating rare cancers named their medical association, professional conferences, peers, or KOLs among the sources they trust most for clinical information. This highlights the need for independent education, delivered through trusted channels and designed around the needs these clinicians report.
AI AND RARE CANCER CARE
Where Oncologists Want AI to Help
Q: Which applications of AI in rare cancers are you most interested in learning about?
Interest concentrates on two specific jobs: catching a differential earlier and reading an image or biomarker faster, each named by nearly half of respondents. Clinical trial matching draws real interest too. Passive tools that flag patterns in EHR data trail behind, and 8% see no near-term use for AI in their practice at all.
- 48%AI-assisted differential diagnosis
- 48%AI-supported imaging or biomarker interpretation
- 42%AI in clinical trial matching
Time and place
Medlive Platform Engagement Insights
- 73.3%of learning sessions happen on desktop
- 2 PMis the peak engagement hour
- Wednesdayis the busiest day of the week on the platform
Desktop v Mobile
- Desktop 73.3%
- Mobile 26.7%
Among the specialties we surveyed, rare oncologists are the most likely to view educational content on a phone or tablet.
In response
Building Education that Aligns with Clinician’s Needs
Visit the programs below to see how NORD brings trusted rare oncology education to clincians through the Medlive platform.
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