top of page

 Research. Knowledge. Hope.

Advancing IM through

shared knowledge

Infantile Myofibromatosis is rare - and rarity makes research difficult. ​When a patient is diagnosed with IM, families are often left navigating uncertainty with limited data to guide them.

​

The IM Strong Foundation is focused on building a secure, privacy-first research hub where families can choose to share de-identified medical information to help identify patterns, improve monitoring and support future treatment advancements.​​​

 

Your experiences and outcomes provide critical insights that help guide future care.

​

Every response is a step toward better treatments, and your data allows for stronger studies, grant applications, and clinical understanding of IM.

\
Contribute to Research

Thank you for considering sharing your child's medical information with the IM Strong Foundation.

Infantile Myofibromatosis is a rare condition and limited data makes it difficult for families and clinicians to understand patterns, risks, and outcomes. By voluntarily sharing anonymized information you are helping build a clearer picture that may support future research and care.

Please remember:
  • Participation is optional 
  • All responses are de-identified
  • No names, contact information or identifying details are collected
  • Data is used only in aggregated form for research and educational purposes​

Infantile Myofibromatosis Questionnaire

Type of Myofibromatosis diagnosed
Solitary
Multicentric (non-visceral)
Multicentric with visceral involvement
Unsure
Age at Diagnosis
Prenatal
At birth
0-3 months
3-12 months
1+ years
Other
Areas affected (please check all that apply)
Has genetic testing been performed?
Yes
No
Unsure
Family history of IM or similar tumors
If yes, was a known IM-related mutation identified?
Current monitoring approach
Frequency of imaging (if applicable)
Treatments received
Research & Clinician Access

The IM Strong Foundation is working to build a carefully de-identified data resource contributed voluntarily by families to help identify patterns, improve monitoring recommendations, and support future research.

Because Infantile Myofibromatosis is still not well understood, meaningful progress depends on shared knowledge. Qualified clinicians and researchers may request access to aggregated, anonymized information for legitimate educational or research purposes.

Our goal is to responsibly bridge the gap between patient experience and medical research while protecting the privacy and trust of the families who make this work possible.

Clinician Access Request Form

The IM Strong Foundation provides controlled access to de-identified, aggregated data to support research into Infantile Myofibromatosis.


Access is granted on a case-by-case basis.

Primary Role
Type of data requested (check all that apply)
Do you agree with the following? Please check all boxes*

Medical Research & Findings
 

© 2023 by The IM Strong Foundation. All rights reserved.

bottom of page