Emily’s Entourage – creating a future where no one with cystic fibrosis is left behind

Cystic Fibrosis Queensland is proud to partner with Emily’s Entourage

Cystic Fibrosis Queensland (CFQ) is proud to be an official international partner of the Emily’s Entourage (EE) CF Clinical Trial Connect global patient database. EE is a globally recognised not-for-profit organisation dedicated to accelerating research and drug development for people with cystic fibrosis (CF) who are unable to benefit from current CFTR modulator therapies.

While transformational breakthroughs have changed the lives of many people with CF, around 10% of the global CF community continue to be left behind because they have rare gene variants, cannot tolerate modulators, or do not receive sufficient benefit from these treatments. Together, CFQ and EE are committed to ensuring that no person with cystic fibrosis is left behind.

Through our partnership, we are connecting Australians living with CF to global research opportunities, supporting faster clinical trial recruitment and helping accelerate the development of new therapies that have the potential to benefit everyone living with cystic fibrosis.

What is Emily’s Entourage?

Emily’s Entourage (EE) is a nonprofit organisation founded in the United States by Emily Kramer-Golinkoff, a person living with cystic fibrosis (CF), and her family.

Emily’s Entourage (EE) is an innovative patient-led nonprofit organisation that accelerates research for new treatments and a cure for individuals in the final 10% of the CF population who do not benefit from currently available mutation-targeted therapies.

Since 2011, EE has awarded millions of dollars in research grants, launched a clinical-stage CF gene therapy company, developed the Clinical Trial Connect (CTC) patient database and a clinical trial matchmaking program to accelerate global trial recruitment, and led worldwide efforts to drive high-impact research and drug development.

Their mission is simple:

Fast breakthroughs for every person living with cystic fibrosis.

Emily’s Entourage – CF Clinical Trial Connect (CTC)

As part of our partnership, Cystic Fibrosis Queensland is promoting Emily’s Entourage CF Clinical Trial Connect (CTC) throughout Australia. The CTC is designed exclusively for people with cystic fibrosis who are unable to benefit from current CFTR modulators.

The database is designed for people who:

  • have gene variants that are not eligible for current CFTR modulators
  • cannot tolerate CFTR modulators because of side effects
  • receive limited or no clinical benefit from existing modulator therapies

Parents or guardians can also register children under 18 years of age.

Why join CF Clinical Trial Connect?

Joining is free, takes only a few minutes and could help accelerate the development of future treatments.

By registering you can:

Gain early access to information about clinical trials

Receive personalised notifications about clinical trials you may be eligible for based on your age, mutation and other information.

Advance treatment for 100% of people with cystic fibrosis

Help researchers identify potential participants more quickly, reducing one of the biggest barriers to developing new treatments.

Be part of the solution

Contribute to global efforts to ensure people who do not benefit from current therapies are represented in research.

Stay informed

Stay informed about emerging therapies and clinical research opportunities relevant to your circumstances.

Every person who registers helps strengthen the evidence that there is an urgent need for continued investment in therapies for those still waiting for effective treatment.

Why this partnership matters

Cystic Fibrosis Queensland believes that every person living with cystic fibrosis deserves access to effective treatments and the opportunity to participate in research, regardless of their genetic mutation.

This partnership strengthens our commitment to:

  • improving access to clinical trials for Australians
  • supporting the development of therapies for people left behind by current treatments
  • advocating for equitable access to innovation
  • connecting our community with world-leading international research initiatives.

Together with Emily’s Entourage, we are helping build a future where every person with cystic fibrosis has access to life-changing treatment.

How does CF Clinical Trial Connect Work?

Joining CF Clinical Trial Connect only takes a few minutes. You will be asked for basic information, including your contact details, demographics, genetic mutation, and microbiology. You can register for yourself, or for an eligible loved one if you are the parent or guardian of a child under 18 years old.

Once you have joined, you will be added to their database. They will contact you about clinical trials that you might qualify for based on the information you provided. You can log in at any time to update your profile and to see current trials that EE is supporting recruitment for.

CTC also uses aggregated geographical data from registrants to help inform clinical trial site selection.

Who can participate?

The CF Clinical Trial Connect database is open to people with CF from around the world who are unable to benefit from CFTR modulators, including those with:

    • Ineligible genetic mutations
    • Side effects from CFTR modulators
    • Suboptimal response to CFTR modulators

If you are under the age of 18, a parent or guardian can register on your behalf.

Your privacy matters

Protecting your personal information is a priority.

The information you provide is stored securely and is used only to identify appropriate clinical trial opportunities and to support planning through de-identified, aggregated data. Your personal information is not shared with researchers or pharmaceutical companies without your permission.

CF Clinical Trial Connect meets compliance requirements for the communities Emily’s Entourage serves, including General Data Protection Regulation (GDPR) requirements for the United Kingdom and the European Union.

Your data privacy and protection is important to us. Read the privacy policy for CF Clinical Trial Connect.

Register today

If you or your child are unable to benefit from current CFTR modulators, we encourage you to register with Emily’s Entourage CF Clinical Trial Connect and become part of the global effort to accelerate new treatments for everyone living with cystic fibrosis.

Register now

For further information about the partnership or clinical trial opportunities, please contact Services.