Research, Advocacy, Awareness, and Support
The Desmoid Tumor Research Foundation is the world’s leading foundation dedicated to desmoid tumor research, advocacy, awareness, and support.
The priority of the DTRF is to facilitate cutting-edge collaborative research by funding research projects at the world’s top sarcoma centers in basic and translational science and clinical trials. This research seeks to determine what goes wrong in cells to generate these tumors, what medical and surgical options work best, and what existing drugs or potential new drugs could provide effective treatments. In addition to funding research, the DTRF facilitates collaboration between researchers from different institutions to advance desmoid tumor science.
We are just getting started.
With the recent FDA approval of Ogsiveo™ (nirogacestat) as the first-ever approved medical therapy for desmoid tumor patients, our hope continues to thrive! An approval like this propels research and interest in desmoid tumors. The DTRF will continue to aggressively fund research projects and collaborate with industry to accelerate the development of additional therapies toward a cure for each and every desmoid tumor patient.
Our Impact
DTRF-funded research has made significant, record-breaking advancements in our understanding of the disease.
Discoveries made through desmoid tumor research can also potentially have a significant impact on many other more common cancers such as breast, colon, ovarian, and others. We’ve seen exciting progress along the way and the results of this work have never been so clear: The number of clinical trials for desmoid tumor patients that launched in just the last 9 years is greater than the number of trials launched throughout the prior 23 years. In the last 10 years, we’ve seen an increase in the launch of phase II clinical trials and the first phase III trials for desmoid tumor patients.
Every trial
is a possible answer for our community
Every trial
tells us more
Every trial
is hope
After more than a decade of collaboration among advocates, patients, industry, and medical professionals, the U.S. Food and Drug Administration (FDA) has granted approval to SpringWorks Therapeutics for its gamma secretase inhibitor, OGSIVEO™ (nirogacestat), for the treatment of adults with progressing desmoid tumors.
This drug is the first-ever FDA-approved medical therapy for desmoid tumors and represents a beacon of hope for desmoid tumor patients.
Learn more about the pathway to approval for nirogacestat here.
Below are examples of some of the ways that the DTRF impacts the research community:
- Annual International Research Workshop for Medical Professionals
- Research Grants
- Collection of published Desmoid Tumor Research
- The DTRF compiles a comprehensive collection of articles and links to published desmoid tumor research, making them accessible to physicians, researchers and patients around the world
- Facilitation of and connecting patients to clinical trials
- Tissue Sample Donations
Impact at Record-Breaking Speed
The DTRF is founded as a labor of love to fund research and find answers for the desmoid tumor community. Fundraising begins upon obtaining 501(c)(3) status.
This would eventually grow into raising millions of dollars to fund dozens of grants at top sarcoma research institutions around the world over our history.
Just outside of NYC, ~30 people attend the meeting where 1 doctor speaks. Today, the DTRF’s annual Patient Meeting attracts hundreds who hear from a slate of experts from top research institutions in the U.S. and around the world.
This evolves into the DTRF’s largest annual signature fundraiser celebrating the desmoid community while raising research dollars
In Philadelphia, PA, >20 doctors participated in this full day workshop. Today, our annual Workshops attract hundreds of attendees from prestigious institutions around the globe.
The purpose of this tool (called GODDESS) is to have the patient’s voice heard and pave the way for new endpoints in clinical trials. Partnering with Mrinal Gounder, MD at Memorial Sloan Kettering and PRO leaders at IQVIA, the tool would be validated in clinical trials gathering important data on patient quality of life and response to treatment.
This revolutionary program allows patients to advance research by consenting online to the collection of live desmoid tumor tissue during surgery.
With the support of NORD and the FDA, the DTRF begins collecting data which informs the Natural History Study of the disease – a huge step forward in desmoid science.
The Board allows doctors to present a patient’s case from anywhere in the world for input from desmoid tumor experts.
~50 people attend the meeting where doctors from major nearby institutions present.
This scientific paper, and the patient-friendly version, become an invaluable resource to doctors and patients worldwide.
Per study PI, Dr. Mrinal Gounder, the DTRF provides “record-breaking” accrual during recruitment phase. Study is named by ASCO as an “Advance of the Year” and one of the top breakthroughs in Oncology in 2018.
Building on a patient-driven campaign, the DTRF claims the month of September on behalf of the international patient community to promote awareness for desmoid tumors.
The workshop hosted almost 200 registered attendees from 72 institutions in 32 different countries.
Patients share disease impact to convey the importance of recognition and support by government agencies.
This included 30+ volunteers for collaboration and a deeper connection to the patient voice.
The DTRF receives the NORD Abbey S. Meyers Leadership Award.
The codes are specific to the diagnosis of desmoid tumors, including subcategories for tumor location. The codes are approved in May 2023, and implemented in October, 2023
The roundtable was for international desmoid advocacy and community groups worldwide. The conversation focused on needs and challenges of advocacy.
Global Genes named the DTRF the RARE Champion in Advocacy (Foundation).
Academic institutions and pharma join to improve how imaging is used to monitor change and track drug response in desmoid tumors, moving toward new clinical trial endpoints.
This study partners with international healthcare and patient advocacy organizations to learn more about the decisions women make regarding pregnancy after a desmoid tumor diagnosis.
This information is available on our website.
The DTRF speaks first at a special desmoid tumor webinar associated with the conference.
The DTRF advocates for almost a decade for clinical trials in the promising desmoid tumor treatment nirogacestat. After a successful Phase 3 trial, Springworks Therapeutics files a new drug application. If approved by the FDA, this will be the first drug approved in desmoid tumors! The trial is published in the NEJM.
Now available for purchase at the ATCC. Second cell line sent to ATCC shortly thereafter.
New ICD-10 diagnosis codes for desmoid tumors are implemented 2023, beginning an era of more accurate data for research and improved patient care.
After more than a decade of collaboration among advocates, patients, industry, and medical professionals, the U.S. Food and Drug Administration (FDA) has granted approval to SpringWorks Therapeutics for its gamma secretase inhibitor, OGSIVEO™ (nirogacestat), for the treatment of adults with progressing desmoid tumors.
This drug is the first-ever FDA-approved medical therapy for desmoid tumors and represents a beacon of hope for desmoid tumor patients.
A revision to the Global Consensus Paper on desmoid tumor management was published thanks to the hard work and collaboration of an international group of physicians, scientists, and patient advocates (collectively known as “The Desmoid Tumor Working Group”). Peter Hohenberger, MD, PhD, Bernd Kasper, MD, PhD, and Alessandro Gronchi, MD, also DTRF Advisory Board members, led the group on this project.
Please note: Currently, the updated paper is only accessible with a subscription through JAMA Oncology. After one year, a full version will be publicly available. Patient guidelines are being developed, and we’re hopeful they will be published by early 2025, at which point we will make amendments to the rest of this page to reflect this update.
Your Donation Changes Lives
When you donate to the Desmoid Tumor Research Foundation (DTRF), you help fund research toward better treatment options and a cure for each and every desmoid tumor patient. Every donation, no matter the size, helps us continue our mission. We are so grateful for your contribution.
The DTRF is a Connecticut non-stock, nonprofit corporation, determined by the IRS to be a tax-exempt Section 501(c)(3) organization. Donations are deductible to the extent allowed by law. Federal Tax ID number: 61-1493017.
Dr. Mrinal Gounder
Dr. Gounder on the DTRF’s Perseverance with Sorafenib
Continue Exploring
Virtual Tumor Board
Annual Weekend
Our annual DTRF Together We Will Weekend is a time for patients, family, and friends to connect with each other and participate in informative lectures and roundtables on desmoid tumors and race/walk in our Running for Answers 5K.
Power Research with the DTRF Patient Registry
