DTRF Patient Registry - Desmoid Tumor Research Foundation
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DTRF Patient Registry

We can’t complete the puzzle without YOUR piece!

You could help reveal a connection never drawn about desmoid tumors, or add more nuance to something we thought we already knew by sharing your unique story with the DTRF Patient Registry at DTRF.iamrare.org.

Part of a cooperative project with the FDA and National Organization for Rare Disorders (NORD), The DTRF Patient Registry has been established to study the natural history of desmoid tumors. The more patients participating in the online study, the more can be learned.

If you have ever had a desmoid tumor, you can participate. If you are the guardian or caregiver of anyone who has ever had a desmoid tumor, you can register and complete surveys on their behalf.

To start, simply set up an account at DTRF.iamrare.org and begin completing the online surveys. We hope that you’ll complete all surveys available to you, answering as many questions as possible, but you don’t have to do it all at once! We encourage you to complete what you can, save your progress, take a break, and return to the surveys again later.

You’ll be able to see how your experience compares with others while completing the surveys. After you complete each one, you’ll be able to view aggregate data. Your story is a part of the puzzle.

Data is de-identified to maintain privacy and confidentiality. Participation in the DTRF Patient Registry is free and voluntary, and participants may withdraw at any time.

Email us at registry@dtrf.org with any questions.

Thank you for your actively taking part in your research!

 

What is a patient registry?

A patient registry is an online data system that systematically collects, stores, and retrieves patient data for analysis in research studies.  The DTRF Patient Registry serves to:

  • Provide a convenient online platform for patients or their legally authorized representative to report cases of desmoid tumors.
  • Conduct a prospectively-planned natural history study that will result in the most comprehensive understanding of desmoid tumors and their progression over time.
  • Characterize and describe the desmoid tumor patient population as a whole.
  • Assist the medical community with the development of recommendations for standards of care.
  • Assist researchers studying the pathophysiology of desmoid tumors.
  • Support the design of clinical trials that explore new desmoid tumor treatments.

 

Overview of DTRF Patient Registry

The DTRF Patient Registry is more than a versatile online system that securely collects and stores data for medical research; it is a dynamic participant-driven resource that can empower and unite the desmoid tumor community through shared knowledge. Registry participants not only can complete surveys about their own disease experiences, but also can learn about other participants’ experiences by viewing aggregated survey data. Participation in the DTRF Patient Registry is free and voluntary, and participants may withdraw at any time.

 

What types of data will be collected in the DTRF Patient Registry?  Is the data secure?

The DTRF Patient Registry collects data on the following topics:

  • Socio-demographics
  • Medical and diagnostics
  • Treatment and disease progression
  • Management of care
  • Quality of life
The DTRF Patient Registry follows strict government guidelines to assure patient information is protected. The registry platform is served over HTTPS, providing encryption of traffic to prevent eavesdropping and man-in-the-middle attacks. Communication between the registry platform application server and the database are also encrypted.

 

Community Involvement

The DTRF Patient Registry is a powerful opportunity for individuals with desmoid tumors and their family members to contribute directly to research that will enhance our understanding of desmoid tumors, thus facilitating the development of new diagnostic and treatment options. Participation is especially vital given the rarity of desmoid tumors – every patient experience is a unique and invaluable part of the natural history of desmoid tumors.

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