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


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