Get involved in COVID-19 research studies

This webpage highlights some of the studies that you could take part in so that we gain as much information as possible on the impact and consequences of COVID-19 on our community. Please do consider getting involved in this research.

IMPaCCt Study - investigating the impact of COVID-19 on caregivers and patients

Survey link: https://www.surveymonkey.co.uk/r/IMPACCTsurvey

Researchers at Queen’s University Belfast and University of Aberdeen are conducting an online international survey to identify the impact that this pandemic has had and continues to have on patients and their carers in families affected by rare diseases.

The results from this survey will be collated anonymously and they hope to provide rapid feedback to clinicians and PID UK about the current needs expressed by patients and caregivers.

Full details available at https://www.qub.ac.uk/sites/RareDisease/News/IMPaCCtStudy-investigatingtheimpactofCOVID-19oncaregiversandpatients.html

COVIDENCE UK study

www.qmul.ac.uk/covidence

This research is designed to find out whether people with conditions such as PID may be at increased risk of coronavirus disease. The researchers are looking to recruit a broad mix of people from all over the UK, including those who have NOT had coronavirus infection, and those who HAVE already had proven or suspected coronavirus infection.

The study will involve filling in an on-line questionnaire to collect information about your lifestyle, diet, longstanding conditions and prescribed treatment. Completion takes 30-60 minutes. After that, you will be contacted monthly via email to report possible symptoms of coronavirus disease. The data you provide will be linked to your medical records, to allow the study team to investigate whether coronavirus infection may affect long-term health.  For further information, please visit the study website: www.qmul.ac.uk/covidence.

COVID App study

Download at https://twinsuk.ac.uk/our-research/ covid-19/

You can take part important research to improve the understanding of the spread of infection and its impact on the PID community. The App, supported by UKPIN, working with PID UK, is part of a national programme and has been set up is so that information about PID patients can be collected specifically.

The App can be downloaded from this website: https://twinsuk.ac.uk/our-research/ covid-19/. You must register with your postcode and email address.  Please let PID UK know you have registered by sending us an email, with your full name and postcode, so that the relevant information can be pulled together at the later date.

Posted 12th May 2020