Desmoid Tumor Research Foundation

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.

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

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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