Take Part In A Research Study

This page will be updated as and when opportunities to take part in research studies are made available

IMPaCCt Study – Investigating the impact of Covid-19 on caregivers and patients

Researchers at Queen’s University Belfast and University of Aberdeen are conducting an online international survey to gain an understanding of the impact Covid-19 is having on people with a rare disease and their caregivers.

Results from this survey will be collated anonymously and hopefully it will  provide rapid feedback to clinicians and Genetic Alliance UK (an umbrella organisation for Rare Disease groups which CLDF is a member of) about the current needs expressed by patients and caregivers.

The study has been ethically approved by Queen’s University Belfast, Northern Ireland. A copy of the research ethics approval letter can be provided if required.

Here is the link to the survey.

For more information click here and if you have any questions please do not hesitate to get in touch with a member of the research team by email Julie.mcmullan@qub.ac.uk.

Thank you for your help with this research and for considering participation in this project.

The IMPaCCT Study Team

University Hospital Southampton: Study to monitor COVID-19 infections in children and young people who are immunosuppressed

Many families have expressed concerns about the impact coronavirus will have on their immunosuppressed children. There are a number of studies currently taking place to try and gather this data to enable professionals to give you more informed advice. This study will consist of a weekly questionnaire that takes less than 10 minutes to complete.

If you or your child is less than 18 years old and has a condition that makes them more vulnerable to infections or is on drugs that affect the immune system and would like to take part in this study please follow the link below for further information.

For full study information and for more details about how to take part please click here www.uhs.nhs.uk/immunoCOVID19study

Please note if you would like to participate but have not received a link directly from the researchers:

  • For University Hospital Southampton patients email: UHS.recruitmentCRF@nhs.net and include “immunoCOVID19”, name of your child or your own name if you are 16 or older, DOB and clinical team caring for your child’s condition
  • For other hospitals you will need to contact the consultant who is taking care of your or your child’s condition.

If you have any study related queries you can email: immunoCOVID19study@uhs.nhs.uk


Covid-19 and autoimmune liver disease study

The European Reference Network (Rare Liver) have developed an anonymous survey to understand how coronavirus has affected those with autoimmune liver conditions such as autoimmune hepatitis (AIH) and primary sclerosing cholangitis (PSC).
You can complete the survey even if you/your child has not contracted coronavirus. Parents of children under 16 can complete the survey on their child’s behalf.
It is incredibly important that we gather as much information about this as we can so that professionals across the world can use this knowledge to provide more informed advice and treatment for a virus that is new to all communities. You can help by taking a few minutes out to complete the survey and add to the collection of evidence and data.
Read more and follow the link to the survey in the patient information leaflet: Autoimmune liver disease and COVID 19 survey version_English

National Voices – Integrating mental and physical health: Insights from experience

Having a long-term physical health problem can take a major emotional toll. In partnership with the Centre for Mental Health, National Voices are looking to understand people’s experiences of managing the emotional and psychological impact of living with these conditions. They want to understand whether and how people’s emotional support needs are recognised, whether they are met, and how they can improve this support.

They would like to hear from:

• People who are living with one or more long-term physical health conditions
• Family members and partners of people with long-term physical health conditions
• Health and social care professionals who support people with long-term physical health conditions

To find out more or take part email jo.wilton@centreformentalhealth.org.uk

Download this information leaflet for further information National Voices Integrating mental health and physical health leaflet

Children’s Liver Tumour European Research Network (ChiLTERN) Study

Children’s Liver Tumour European Research Network (ChiLTERN) would like parents and families with children diagnosed with liver cancer to complete this short survey to gain your views regarding clinical trials. It should take no longer than 10 minutes to complete. To complete the survey please follow this link  https://bham.onlinesurveys.ac.uk/chiltern-a-survey-for-parents.

For questions relating to this survey, please contact Mrs Norihan Mohd-Taib via email n.mohdtaib@bham.ac.uk

Closing date – end of 2021

Power Survey (currently awaiting phase 2)

The health behaviours team at the Nuffield Department of Primary Care Health are working to bring together the views of the public, healthcare professionals, researchers and those with an interest in weight-related research to identify the most important questions that will help set the research agenda for the next five years. Fill out the short survey and have the chance to win one of five £30 Amazon vouchers.