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The Desmoid Tumor Research Foundation

Advocate for Desmoid Tumor Research in Congress

Foundation News

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We need everyone’s help to protect critical funding for desmoid tumor research. This call-to-action is for anyone reading this message, whether you are a patient, clinician, or caregiver. 

A few weeks ago, the National Institutes of Health (NIH) announced a major change: they plan to reduce the rate for “indirect costs” to 15% for all new and existing NIH contract awards. Indirect costs are essential to supporting the infrastructure that enables scientific research.

The decision has already been met with strong opposition, and multiple states have filed lawsuits challenging this decision. In addition, we have now heard from a number of the DTRF advisory board members asking for our help in mobilizing the desmoid tumor community. If this policy change is enacted, it can directly affect researchers studying desmoid tumors and it can significantly hinder the progress of our research efforts. 

Please urge your Senators and members of Congress to oppose the recent Executive Order to cut NIH indirect costs. 

The NIH is the world’s largest funder of biomedical research. If enacted, the Executive Order would cut tens of millions of dollars in essential support services to scientists and clinicians who are driving scientific discovery.

Congress needs to hear from you TODAY on how cuts to NIH research impact you.

WHAT YOU CAN DO:

  1. Find contact information for your Members of Congress
  2. Call them directly.
  3. Use the script below to make your request:

“Hello, my name is [YOUR NAME], and I am a rare disease advocate from [YOUR CITY, STATE]. I am deeply concerned about the decision to cut NIH funding, which will severely impact rare disease research and would impact my [SELF, CHILD, FAMILY MEMBER, FRIEND, ETC]. 

These cuts will prevent the research that could lead to treatments and a cure for Americans living with desmoid tumors. I urge [SENATOR/REPRESENTATIVE NAME] to support full NIH funding and reverse these harmful cuts. Thank you for your time and commitment to medical research.“

You can also download the 5 Calls app to make this call-to-action even easier. Follow the steps on the app to connect with your Senators and members of Congress.

Every call makes a difference! Please share this message with your networks and help us ensure that desmoid tumor research continues to receive the support it needs.

In the meantime, we will remain committed to our work of accelerating desmoid tumor research and supporting the patient community.

Thank you for taking action today!

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At the DTRF, we want to “Spread the Word” far and wide that desmoid tumors are NOT benign.

The medical community, research publications, and other sources often use differing terms when describing desmoid tumors; one of those terms is the word “benign.” Over the years, we’ve heard countless stories that this is confusing to patients as well as clinicians. This confusion can lead to misunderstandings about treatment and minimizes the potentially serious consequences of this rare disease. 

How are desmoid tumors classified?
Desmoid tumors (also known as aggressive fibromatosis, desmoid fibromatosis, and desmoid-type fibromatosis) do not metastasize. They are classified by the World Health Organization (WHO) as  “Intermediate (locally aggressive)” soft tissue tumors. They do not fall under “Benign” or “Malignant” classifications.

Learn more about the World Health Organization’s (WHO) classification of desmoid tumors, which is listed under Table II: Fibroblastic/Myofibroblastic Tumours.

To make a significant impact on behalf of the patient community, we invite you to connect with the DTRF, share our social content, and spread the word that desmoid tumors are NOT benign.

Thank you for helping raise awareness and educate the community about the classification of desmoid tumors!

Watch the Spread the Word Facebook Live conversation with desmoid tumor patient, Amy Beitz.

Watch the Spread the Word Webinar, “Understanding the Classification of Desmoid Tumors.”

View and follow our campaign posts on Facebook.

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On the morning of Saturday, February 8th, the DTRF convened patients, caregivers, and clinicians for a special educational event in downtown Philadelphia. For the first time, DTRF partnered with the leading sarcoma center, Penn Medicine.

Roughly 35 attendees joined us for talks given by Penn Medicine sarcoma specialists on topics like medical therapies, fertility, interventional radiology, genetics, and surgery. Included also was a focus on our experts:  those living with desmoid tumors (in a patient panel) and clinicians treating patients (in a mock tumor board).

After the talks, everyone convened for lunch, where clinicians connected one on one with patients. 

One attendee stated, “Saturday was incredibly enlightening, and I now have several questions for my team at my upcoming appointment.”

We are so grateful to everyone who joined us for this special event, including our partners at Penn Medicine, and event sponsor, the Green Family Foundation.

View some of our event photos here. 

View the event schedule here.

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Dear DTRF Desmoid Tumor Patient Registry Participants,

Thank you for your ongoing contributions to the DTRF Patient Registry. We are excited to tell you that NORD®, the host of the registry, has upgraded to a new version of the IAMRARE® platform. We have been working with NORD to migrate the DTRF Patient Registry to the new platform, and this process is nearing completion. The data you have already contributed to the Registry will be transferred to this new platform automatically. Once the migration process is complete, you will receive an email that will describe the steps you need to take to access the new platform. 

To complete the migration, we will need to pause access to our registry beginning on February 10th, 2025. You will not be able to access the platform or complete surveys during this time.

As part of migration, we have updated our study documents including the Informed Consent document you previously signed. These are the changes that we wish to make you aware of:

  1. We are now more specific about different levels of data use requests that the DTRF Patient Registry may receive from researchers. The levels are based on how much and how detailed the information needs to be for them to answer their research question(s). We also provide an explanation for the process involved in determining whether the requests should be approved and what level of data should be provided. The details of this are explained in the section called How We Use the Data.
  2. We indicate in the section called If You Live Outside the United States that the servers that store the data are now located in Canada.
  3. During registration for the platform, we are collecting information to be able to create a Global Unique Identifier for each participant. The goal of this identifier is to allow the combination of different data sets without having to share your name or other personal information.
  4. The original consent that you signed stated that if you were to choose to withdraw from the study, then the policy was that the participant’s information would not be used for new research. This has been changed in the new consent and is included in the section on Voluntary Participation, Withdrawal and Alternative to Participating. The main difference is that you now have a choice: 1) you withdraw from the study and you will not provide any new information, but the information already included can be used for ongoing and new research, or 2) you withdraw from the study and request that your information is removed from the platform and not used in new research. If you wish to withdraw your consent, please reach out to us and inform us of which option you are choosing.

We have attached the new consent form to this letter for you to review. If you would like to speak with someone from our team to answer any questions, please let us know at registry@dtrf.org. If you wish to reconsider your willingness to take part in the study, please let us know at registry@dtrf.org.

Please feel free to reach out with any study-related questions or to discuss any concerns. 

Sincerely,

The Desmoid Tumor Research Foundation Team

DTRF Patient Registry Consent Forms:
Adult Consent for Study Participants over age 18

Consent for a person with a Legally Authorized Representative (LAR) who is unable to consent for him or herself

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In recent months, the DTRF learned from patients that the 50mg tablet of Ogsiveo® (nirogacestat) will no longer be available after 2024. The DTRF contacted SpringWorks Therapeutics to advocate for patients who are currently receiving the 50mg tablet.

Last week, the SpringWorks Therapeutics team confirmed that the 50mg tablet of Ogsiveo® will, in fact, no longer be available as of January 1, 2025.  

New blister packs are available for the FDA-approved 100mg and 150mg doses of Ogsiveo®. Click here to read the statement SpringWorks provided to the DTRF.

The DTRF advises that patients talk to their physician, pharmacist, or other trusted medical team member with any questions. Medical professionals are encouraged to reach out to the SpringWorks Medical Information team on behalf of their patients to receive answers to questions regarding this change.

Follow the steps below with the help of your medical team to receive the most timely and accurate Ogsiveo® information: 

  1. Bring your Ogsiveo® dosage questions or concerns directly to a trusted member of your medical team (including your physicians and pharmacists).
  2. Ask your trusted medical professional to contact a SpringWorks Medical Information team member directly at 1-888-400-7989 or medinfo@springworkstx.com.
  3. Request that your medical professional ask specific, direct questions when discussing Ogsiveo® so that clear recommendations can be relayed back to their patient(s).

Please note: Only medical professionals, including physicians, pharmacists, or other medical team members, are permitted to discuss Ogsiveo® dosage questions or concerns with the SpringWorks Medical Information team.  

If you are a desmoid tumor patient needing educational, emotional, or financial support and resources while taking Ogsiveo®, you can connect directly with SpringWorks CareConnections™. 

If you’ve been impacted by the 50mg tablet no longer being available, please contact the DTRF at info@dtrf.org to share your experience and help us continue advocating for desmoid tumor patients.

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A revision to the global consensus paper on desmoid tumor management has been 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, led the group on this project.

By evaluating existing evidence from prior scientific publications, and incorporating the input of desmoid experts worldwide, the paper is a revised and updated evidence-based consensus on the management of desmoid tumors. It answers critical questions regarding approach to treatment recommendations, types of treatments, and pain management.

As there are varying treatments used for desmoid tumors and access to medical therapies and information greatly varies by country, many patients are treated based on the experience and expertise of a single physician which may be limited. DTRF has made it a priority to improve this situation by supporting the revision of this collaborative paper. The paper is, in part, the result of a 2023 DTRF grant, entitled “An evidence-based 2nd consensus on the treatment for desmoid tumors.”

Currently, the paper is only accessible through JAMA Oncology with a subscription​. A full version of the paper will be accessible after one year.

Patient guidelines will be developed and shared with the community as soon as they are published.

Current Management of Desmoid Tumors: A Review

The Desmoid Tumor Working Group led by Bernd Kasper, MD, PhD, and Alessandro Gronchi, MD

Access Global Consensus Paper