Q1. What is CAPTURED?
CAPTURED is a clinical trial that aims to get patients with rare and difficult to diagnose disease diagnosed faster, enabling them to get the correct treatment where needed.
Q2. What is the point of CAPTURED?
Rare and difficult to diagnose diseases can often present with differing signs and symptoms making it tricky for Doctors to diagnose. CAPTURED aims to guide Doctors in getting patients who might be at risk the correct tests they need.
Q3. What happens to patients?
Patients are identified as at risk from disease from an anonymous data set called OPCRD. OPCRD contains electronic health record data that GP practices share for research. Patients that are identified through CAPTURED will be offered specific diagnostic testing as part of their routine care at their GP practice. Where needed, patients will be referred to a specialist for onward care or treatment.
Q4. Is CAPTURED looking at all diseases?
No. CAPTURED will be looking at up to 10 different diseases.
Q5. I want to take part in CAPTURED, what do I do?
Individual patients are not able to take part as CAPTURED is being delivered at a practice level. This means patients must be registered to a participating GP practice.
Q6. What are the risks of CAPTURED?
CAPTURED is being delivered by GP practices, as part of patient's routine care. All patients who are identified as at risk will have a review of their medical record to ensure they are appropriate for further testing. Routine care will continue as normal.
A patient may be identified as at risk and then find that they don't have a specific disease which may cause psycological distress (anxiety and worry) and also will mean patients having appointments and tests which can have an impact on their lives.
It is important to bear in mind that all diseases that are being considered under CAPTURED are treateble, and therefore identifying patients that may need treatment is very important. The testing process is definitive (it will determine if a patient definitely does or doesn't have a disease) and negative results provide useful information for health care professionals and help guide decision making in the future.
Patients will be offered the opportunity to fully discuss the process and can choose to decline testing if they wish.
Q7. I don’t want my data being used for research, what do I need to do?
If you do not want your data to be used for research, you can opt out by speaking to your GP practice team. This will not affect any care you receive.