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? The guide below has some answers.
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.
There are three main types of research you might take part in
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
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 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.
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.
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.
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