Taking part in research

Being part of a research project may mean you get better treatment at the same time as helping other people with your condition. So what's involved and how can you sign up? This guide below has some answers.

Who does research into PID and why?

Many hospitals, universities, drug companies and some charities are involved in PID related research. Doctors, scientists, research nurses and patients all help in this.

The research aims to

  • Improve our understanding of PID including identifying the different genes and pathways that go wrong in these conditions.
  • Develop better treatments and cures for PID
  • Improve people's quality of life.

Why should I take part in research?

Healthcare breakthroughs can only happen if evidence shows that a new prevention, treatment or cure is safe and beneficial. This evidence is collected by carrying out research studies that involve patients.

There's lots of reasons to be involved in research. Some of these might benefit you personally:

  • You might benefit from a better treatment
  • Your condition might be monitored more closely
  • You and your doctor might learn more about your condition and be able to tailor treatment more appropriately
  • You might meet people with the same condition.

There are also broader reasons to get involved:

  • You might be helping to develop better ways to look after people who have the same condition as you
  • You might be helping to give a better future for people with PID.

What sort of research can I take part in?

There are three main types of research you might take part in

Observational

An observational study helps researchers understand your condition better or a group of people with the same condition better. It will not directly affect your health, as no new treatments may be given. One example is allowing your medical information to be entered into the UK PID registry. Others might include:

  • Samples being taken such as blood, sputum and lung fluids
  • Measurements being taken, such as lung function tests
  • An interview or questionnaire

Interventional

An interventional study is when a new treatment, for example physiotherapy or new drug, is given. Every drug that is prescribed to treat PID has been through research studies to make sure that it works and is safe to use.

Qualitative

Qualitative research aims to understand more about people's experience of living with a condition. In this type of research you might be asked about your experiences of anxiety, pain, doing day-today activities, for example. The research team will try to identify patterns that will help them to understand the issues faced by people living with a PID, and ways to improve these issues.

How do I know that the study is a good one?

Most studies are reviewed by an independent scientific panel to make sure that they are well-designed and meet quality standards. Research carried out in the NHS must follow guidelines set out by the Research Governance Framework for Health and Social Care.

Once this scientific review has taken place, the research team then has to find money to fund the study. During this process, another independent review is carried out by the organisation considering awarding the money. Only the highest quality studies will be funded.

Do I have to get involved in research?

No one has to take part in research and your doctors and research team will understand if you do not want to.  The care you receive will not otherwise be affected by your decision to take part or not take part in research.

If you are interested but you have some questions or concerns about what’s involved, how it might affect your condition, how much time it will take and how you’ll get to the research venue, speak to your health care or research team. They will be able to help answer your questions so that you can informed consent to take part.

Will I get paid for participating in research?

Participating in medical research will usually involve travelling to the place where the research is being carried out, such as a hospital or clinic. Volunteers who take part in a medical research study will often have their travel expenses paid. Before committing to taking part, it’s worthwhile asking the research team exactly what expenses will be covered and what financial compensation will be offered.

How can I find out more about taking part in research?

Your health care team might ask you about taking part in a research study or you might want to look for a study yourself. There are lots of ways to find out more. Try talking to your health care team.

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Posted May 2015