Joining Research

Ways to Participate in SFT Research

Different research studies ask for different types of participation.

Some research opportunities involve only a questionnaire. Others may require additional testing, medical visits, or longer-term follow-up.

The study team can explain who is eligible and what participation involves.

Join the SFT Patient Registry

One important way to contribute to SFT research is through a patient registry.

A registry gathers information from people with the same disease, often over many years.

For a rare tumor like SFT, this can help researchers understand patterns that would be difficult to identify by studying a small number of patients at one hospital.

The Horowitz Solitary Fibrous Tumor Initiative (HSFTI) at Sylvester Comprehensive Cancer Center, University of Miami, has established a dedicated SFT patient registry.

The registry is designed to improve our understanding of how SFT develops, progresses, and responds to treatment.

Researchers collect information about patients’ medical histories and experiences. Participants may also be invited to share medical records, pathology reports, imaging results, or biological samples.

The registry welcomes interest from patients in the United States and internationally.

How to get started

You can express interest in joining through the University of Miami’s registry contact form. The form asks for contact information so a member of the research team can reach you and explain the next steps.

Join the HSFTI SFT Patient Registry

If you have questions, you can contact the study’s principal investigator, Dr. Gina D’Amato, at 305-243-6601.

You can also learn more about the Horowitz Solitary Fibrous Tumor Initiative.

Why this matters: When more patients participate in research registries, scientists can study differences in tumor behavior, treatment responses, and long-term outcomes across a broader population.

Donating Tissue or Blood for Research

Tissue and blood samples can help researchers understand what makes SFT different from other tumors.

Scientists may use donated samples to study tumor cells, genetic changes, proteins, and biological processes involved in tumor growth.

These findings may eventually contribute to better diagnostic tools or new treatments.

Ask your healthcare team whether there is an opportunity to contribute tissue for research.

Some programs can use tissue that remains after the samples needed for your medical care have been collected.

Other studies may request additional blood samples or specific collection procedures.

If you’re interested, ask before your procedure whenever possible. Research samples sometimes require special handling or advance arrangements.

Your medical care and diagnostic testing must remain the priority.

Your hospital may still have preserved tissue from your original biopsy or operation.

Those samples may be useful for certain research studies, depending on their condition, availability, and the requirements of the study.

Ask your hospital where your tissue is stored and whether it could be considered for future research.

Find out what samples will be collected, whether additional procedures are involved, how the samples will be stored, and whether they may be shared with other researchers.

Ask whether participation could involve additional costs or risks and whether you may be contacted for future studies.

Sharing Genetic and Medical Information

Researchers also study the genetic and molecular characteristics of SFT.

For example, most SFTs contain a characteristic genetic change called the NAB2-STAT6 fusion.

Other genetic findings may help researchers explore why some tumors grow slowly while others behave more aggressively.

If you’ve had molecular testing of your tumor, the results may be useful for certain research projects.

Researchers may also request information about your diagnosis, treatments, scans, and outcomes.

You may be asked to authorize access to medical records or share copies of specific reports.

You can still participate in many types of research.

Not every study requires molecular testing, and you should not feel you need additional tests solely to be involved.

If a study does require specific testing, the research team can explain what is needed and whether testing is provided.

Understanding Clinical Trials

Clinical trials are research studies involving people. In cancer care, many evaluate new treatments, treatment combinations, imaging methods, or other approaches to managing disease.

For patients with SFT, trials can be particularly important because there are relatively few treatments studied specifically for this disease.

Some trials are designed exclusively for SFT. Others include several types of sarcoma or patients whose tumors share certain characteristics.

Phase 1

Study safety, dosing, side effects, and how a treatment behaves in the body.

Phase 2

Look for evidence that a treatment works in a particular patient population while continuing to assess safety.

Phase 3

Compare a new treatment approach with another treatment or standard approach, often in a larger group.

Not every SFT study follows this structure. Registries, observational research, and some diagnostic studies have different designs.

Some participants may benefit from an investigational treatment, while others may not.

The main purpose of a clinical trial is to answer a research question. The effectiveness and risks of an experimental treatment may not yet be fully understood.

Before joining, ask your oncologist and the study team about the possible benefits, risks, alternatives, and effects on your existing care.

Placebos are sometimes used in cancer research, but trial designs vary.

When an effective standard treatment exists, participants generally continue to receive appropriate care according to the study design. A placebo may be used alongside standard treatment in some trials.

The consent process should explain exactly how participants are assigned to treatments and whether a placebo is involved.

Yes. Participation is voluntary, and you can choose to stop participating.

Ask the research team what happens if you withdraw, including any follow-up needed for safety and how information already collected will be handled.

Finding a Clinical Trial

Clinical trials open, close, and change their eligibility requirements over time.

You can search for studies through:

• ClinicalTrials.gov: Solitary Fibrous Tumor
• ClinicalTrials.gov: Soft Tissue Sarcoma
• National Cancer Institute Clinical Trials Search
• SARC Clinical Trials

A study may accept patients with SFT even when the disease is not included in the trial title.

Ask your oncologist or a sarcoma specialist to help evaluate eligibility.

Before making plans, ask

• What treatments or tests are being studied?
• Does my diagnosis and treatment history meet the eligibility requirements?
• How many visits will be needed, and where?
• Can some appointments or tests be completed locally?
• Which expenses will insurance cover?
• Is financial help available for travel or lodging?

For more information about treatments being studied, see Part 5: Metastatic and Advanced SFT.

Sharing Your Experience Through Surveys and Interviews

Research isn’t limited to laboratory tests and medical treatments.

Patient and caregiver experiences can help researchers understand challenges that aren’t always visible in medical records.

These may include:

• How SFT affects everyday life
• Symptoms and treatment side effects
• Emotional and practical challenges
• Barriers to diagnosis or specialist care
• Treatment preferences and quality-of-life priorities
• Questions patients want researchers to address

Surveys and interviews may be available to patients, survivors, caregivers, and sometimes family members who have lost someone to SFT.

The Solitary Fibrous Tumor Foundation has launched a Patient Priority Survey to learn directly from the SFT community.

The survey is intended to help identify unmet needs, educational priorities, and questions that matter most to patients and families.

The findings can inform the Foundation’s education, advocacy, and research engagement activities.

Visit CureSFT.org for information about SFTF’s patient advocacy and research activities.

Participation in a patient survey is different from joining a medical registry or clinical trial. Each project has its own purpose, consent process, and information-sharing practices.

Understanding Consent and Privacy

Before joining a research study, you should receive information explaining what participation involves.

This process is called informed consent.

Depending on the study, the consent information should address:

• The purpose of the research
• What information or samples will be collected
• Any risks, discomforts, or expected benefits
• How your information will be protected
• Who may have access to your data or samples
• Whether information or samples may be used for future research
• Whether individual findings or overall study results will be shared with you
• What happens if you decide to stop participating

Research participation is voluntary.

You can generally withdraw from continued participation, although data or samples already collected, analyzed, or shared may not always be removable.

Ask the study team to explain these limits before you agree.

Genetic information can be particularly sensitive.

Even when identifying details are removed, there may be privacy risks, particularly when data is shared across research institutions or included in larger databases.

Ask how your information will be protected, whether it could be shared outside the original research team, and how future research uses are governed.

Research conducted through a medical institution generally operates under formal oversight and applicable privacy protections. Specific safeguards depend on the study.

Getting Ready to Participate

An organized medical record can make it easier to take part in research.

Depending on the study, you may be asked for:

• Your original diagnosis and pathology reports
• Dates and locations of previous treatments
• Imaging reports or scan images
• Molecular or genomic testing results
• Current medications
• Information about recurrences or changes in your disease

You don’t need to gather everything before expressing interest.

The research team can explain which records are needed and how they should be submitted.

See Preparing for a Visit for help organizing your medical information.

Your Next Steps

Use this checklist to explore research opportunities that interest you.

• Consider how you want to contribute. Think about registries, surveys, sample donation, or clinical trials.
• Explore the HSFTI SFT registry. Review the information and contact the study team if interested.
• Ask about tissue donation. If you have a planned biopsy or surgery, discuss research opportunities beforehand.
• Talk with your specialist. Ask whether clinical trials or other studies may be relevant.
• Understand the commitment. Find out what participation involves, including appointments, travel, and possible costs.
• Review consent and privacy. Ask how your information and samples will be used.
• Make the decision that’s right for you. Participation is always your choice.