Understanding clinical trials

A 13-part series to help people living with pulmonary hypertension (PH), their families, and carers understand clinical trials

This series, created by our IDDI Patient Engagement and Empowerment Workstream, is part of the PH patient resources collection. It explains what clinical trials are, how they work, and what it means to take part, so you can feel more informed, confident, and empowered when learning about clinical research.

Clinical trials can feel complex or unfamiliar, but they are a vital part of developing new treatments and improving patient care.

Understanding clinical trials means building the knowledge and confidence to ask questions, understand your rights, and make informed decisions about whether taking part is right for you. It also means recognising the important role patients can play in shaping research — not only as participants, but as partners.

Why are clinical trials important?

Clinical trials help make sure new treatments are safe, effective, and meaningful for patients. They help answer important questions, such as:

  • which treatments work best
  • how care can be improved
  • how quality of life can be supported
  • what patients need and value most
  • how research can better reflect real life

Watch the series

Click on each heading below to learn more. All the videos are embedded directly from YouTube, which means you can watch them with subtitles in almost any language. Just click the cog icon in the bottom-right corner of the video, select Subtitles, then choose Auto-translate and pick your preferred language. This makes the series easy to follow wherever you are in the world, and however you like to learn.

Clinical trials are medical studies that test new ways to prevent, diagnose, or treat disease.

They may look at:

  • new medicines
  • new treatment combinations
  • new ways of using existing treatments
  • new approaches to patient care

Clinical trials help make sure treatments are safe, effective, and meaningful for patients.

They help answer questions such as:

  • which treatments work best
  • how quality of life can be improved
  • how care can progress over time

Taking part in a clinical trial may offer possible benefits, but it is always a personal choice.

You may want to consider:

  • access to new treatments
  • close monitoring from experienced teams
  • the chance to support medical progress
  • extra visits, tests, or monitoring

Clinical trials can offer opportunities, but they also involve uncertainty.

Before joining, it helps to understand:

  • what the trial is studying
  • what taking part involves
  • the possible risks and benefits
  • how your safety will be monitored

Before joining a trial, you will receive detailed information through informed consent.

You have the right to:

  • ask questions
  • take time to decide
  • join only if you choose to
  • withdraw at any time
  • continue your regular care if you leave

Clinical trials use specific methods to make results fair and reliable.

This video explains:

  • randomisation
  • placebos
  • blinding
  • study groups
  • why patients still receive appropriate care

Taking part in a trial can affect your everyday routine.

You may need to think about:

  • screening before joining
  • regular study visits
  • treatment appointments
  • tests and health checks
  • travel and possible expense support

Your involvement may continue after the trial treatment ends.

This video explains:

  • follow-up after the study
  • how results are analysed
  • how your data is protected
  • whether treatment access may continue
  • how to ask about study results

There is no single right decision about joining a clinical trial.

It can help to talk with:

  • your healthcare team
  • family and friends
  • patient organisations
  • people with trial experience

Patients bring valuable lived experience to research.

Their insights can help researchers understand:

  • what daily life with PH is like
  • what outcomes matter most
  • how studies can be more realistic
  • how research can build trust

Patients can help make clinical trials easier and more relevant.

They may advise on:

  • visit schedules
  • study materials
  • consent forms
  • outcomes that matter to patients
  • barriers such as travel or complex procedures

When patients are involved early, trials are more likely to reflect real needs.

Patient input can help:

  • identify challenges before a trial begins
  • make participation more manageable
  • improve recruitment
  • support people to stay in the study
  • create more meaningful results

Patients are playing a growing role in shaping clinical research.

Better collaboration between patients, researchers, clinicians, sponsors, and regulators can help make research:

  • more relevant
  • more effective
  • more realistic
  • more meaningful for patients

Watch the full playlist

You can also watch the full Understanding clinical trials series as a YouTube playlist for easy access and sharing.

Explore more...

PH patient resources
Understanding clinical trials
How to empower yourself & others
Image of clinical trial flyer for patients

A short, shareable guide to help people living with PH understand clinical trials, including what taking part can involve and the rights they have as patients.

Download patient flyer
Image of large font clinical trial flyer for patients

An easier-to-read version of the patient flyer, designed with larger text for improved accessibility.

Download large-font flyer
Image of clinical trial flyer for research teams

A practical guide for sponsors and research teams on why patient involvement matters and how patients can help improve clinical trial design.

Download research team flyer

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Help us reach more people living with pulmonary hypertension by sharing our clinical trials flyers.

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Together, we can build a stronger, more informed pulmonary hypertension community.