Desmoid Tumor Research Foundation
AbbreviationDTRF
Formation2005
TypeNon-profit organization
61-1493017
PurposeResearch for desmoid tumors
Location
  • United States
Websitewww.dtrf.org

The Desmoid Tumor Research Foundation (DTRF) is an American non-profit organization which funds research on desmoid tumors (aggressive fibromatosis), a rare soft-tissue tumor affecting 5–6 people per million per year.[1] Its goal is to improve treatments and find a cure.[2] The organization was founded in 2005 by Marlene Portnoy and Jeanne Whiting after Portnoy's husband and Whiting were diagnosed with desmoid tumors.[3] The Desmoid Tumor Research Foundation is the only American foundation dedicated to desmoid tumor research.

It is a member of the National Organization for Rare Disorders (NORD), the Sarcoma Coalition, and partners with the National Cancer Institute's My Pediatric and Adult Rare Tumor (MyPART) Network.[4][5]

The Desmoid Tumor Research Foundation helped spearhead trials of nirogacestat for use in desmoid patients.[6] Its advocacy led to the creation of desmoid-specific ICD-10-CM disease codes in 2023.[7] The organization has also established a patient registry along with NORD.[8]

References

  1. ↑ Kasper, B.; Baumgarten, C.; Garcia, J.; Bonvalot, S.; Haas, R.; Haller, F.; Hohenberger, P.; Penel, N.; Messiou, C.; van der Graaf, W.T.; Gronchi, A.; Bauer, S.; Blay, J.Y.; van Coevorden, F.; Dileo, P. (October 2017). "An update on the management of sporadic desmoid-type fibromatosis: a European Consensus Initiative between Sarcoma PAtients EuroNet (SPAEN) and European Organization for Research and Treatment of Cancer (EORTC)/Soft Tissue and Bone Sarcoma Group (STBSG)". Annals of Oncology. 28 (10): 2399–2408. doi:10.1093/annonc/mdx323. PMC 5834048. PMID 28961825.
  2. ↑ "Desmoid Tumor Research Foundation". National Organization for Rare Disorders. August 16, 2023. Retrieved August 16, 2023.
  3. ↑ Lerner, Jane (June 1, 2006). "Fundraiser tonight will help research rare tumor". The Journal News – via Newspapers.com.
  4. ↑ "About DTRF". Desmoid Tumor Research Foundation. Retrieved August 16, 2023.
  5. ↑ "MyPART Network Patient Advocacy Partners - NCI". National Cancer Institute. August 8, 2019. Retrieved August 16, 2023.
  6. ↑ Grisham, Julie (March 8, 2023). "Nirogacestat, a New Desmoid Tumor Treatment, Improves Outcomes for People With Sarcoma". Memorial Sloan Kettering Cancer Center. Retrieved August 16, 2023.
  7. ↑ "ICD-10 Coordination and Maintenance Committee Meeting" (PDF). Centers for Disease Control and Prevention. March 8–9, 2022. Retrieved August 12, 2023.
  8. ↑ Mercier, Kelly A.; Walsh, Darragh M. (October 14, 2019). "The initiation, design, and establishment of the Desmoid Tumor Research Foundation Patient Registry and Natural History Study". Rare Tumors. 11. doi:10.1177/203636131988.


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