Rare Disease Day: ‘My life is a daily battle’
26 February 2021
Vince Nicholas (right) with his brother Neil. Both live with the rare disease amyloidosis.
Are you a patient, carer or member of the public who wants to get involved in research? Below are a number of ways you can!
Be Part of Research is a service that makes it easy for the public to learn about and search for research studies. Discover how research studies are designed, what happens when you decide to take part and the importance of taking part. You can:
● Use the search tool to find current research studies happening right now
● Find studies taking place near you
● Filter results easily by age, health condition etc
● Use the site on desktop or mobile
● Download, save or print the full study details so you can talk to your doctor, nurse or healthcare professional.
Once you’ve found a study, you can see all the details including who to contact and ask to take part.
Whether you have been diagnosed with a condition or not, everyone can take part in research.
Register with Join Dementia Research so that you can be told when a study starts in your area and the researchers are looking for people just like you. There's no obligation to take part in any study, but by registering, you’ll find out when new opportunities become available. The service is delivered in partnership by the NIHR, Alzheimer’s Research UK, Alzheimer's Society and Alzheimer Scotland.
Read our Accessibility Statement.
Each year, we approach patients and their carers, asking them to tell us about their experience of taking part in a research study; both the good, and the not so great.
The survey for 2020/21 is now live and patients who have participated in research can find links to complete the survey further down this page.
We conduct this survey to look for ways to improve how clinical studies are delivered, and to make sure all patients have the best possible experience of being in a study. The information given is then used to understand what works best for patients, and where we can make helpful changes in the way we do things.
Last year, 2,972 responses were submitted from participants during the 14 weeks PRES 2019 was open between September and the end of December 2019.
Some of the key highlights were:
Participants
Please click on the relevant link below to complete the survey online.
You won’t be asked for your name or personal details and anything you say will be kept private and no one will know which answers are yours.
Online survey for ADULTS and over 16s
Online survey for children 0-6 years old
Online survey for children 7-11 years old
Online survey for children 12-15 years old
For copies of the paper survey, the URL slips with the QR codes and for copies of the adults and children's poster, email Christine Menzies: christine.menzies@nihr.ac.uk
Site staff should inform participants of the answers to the following three questions before participants complete the surveys:
26 February 2021
Vince Nicholas (right) with his brother Neil. Both live with the rare disease amyloidosis.
21 December 2020
Londoner Yusuf, is doing all he can to help protect others in the fight against COVID-19 and appeals to others from the Afro-Caribbean community to get involved.
15 December 2020
Sarah Atkins took part in the REGAIN study and is now recommending that other members of the public to take part in research.
20 May 2020
Father and son duo Alan and Ed Mitchell both survived coronavirus after being hospitalised at the same time, while Alan took part in the RECOVERY trial.
07 February 2020
Research helped find a 'cure' for Darren's haemophilia
Graham Reeder, a former teacher in Southend, was experiencing symptoms such as swollen fingers and difficulty getting to sleep, before eventually being diagnosed with rheumatoid arthritis.
"Being on the trial was an amazing experience. I can understand people having reservations but I am very much one of those types of people who knows that they (the staff) are giving them (the medication) to me because they know what they are doing, and I put a lot of trust in these people, as I hope parents put a lot of trust in me when I was teaching their children.”
Research Champions help to raise public awareness about research and help to address problems, such as the lack of diversity in research participants.
By talking about research in everyday places - GP surgeries, hospital waiting rooms, community groups, patient groups, social media and amongst family and friends - we aim to make sure that everybody knows what health and care research is, what it involves and why it matters.
The role of Research Champion is nationally-coordinated and the initiative aims to build a bigger and more diverse patient research community, to reduce barriers to research participation and to support the effective and efficient delivery of research.
Research Champions include patients, carers, members of the public, and people who have taken part in a research trial before, as well as those who haven’t. Something that they all have in common is that they are passionate about getting more people involved in research so that we can develop better care and treatment for everyone.
We are keen to recruit new Research Champions and are looking for all partner trusts across North Thames to put forward names of potential Research Champions. If you have someone in mind, please contact Christine Menzies, our PPIE Manager at christine.menzies@nihr.ac.uk
To ensure the safety of our Research Champions we are currently developing a new remote Research Champions Induction and will be releasing details soon.
To learn more about being a Research Champion, you can watch a video featuring one of our Research Champions, below:
Have a look at these resources for Research Champions too:
and for further details, visit the national Research Champions page on the NIHR website.
Each year, we approach patients and their carers, asking them to tell us about their experience of taking part in a research study; both the good, and the not so great.
The survey for 2020/21 is now live and patients who have participated in research can find links to complete the survey further down this page.
We conduct this survey to look for ways to improve how clinical studies are delivered, and to make sure all patients have the best possible experience of being in a study. The information given is then used to understand what works best for patients, and where we can make helpful changes in the way we do things.
Last year, 2,972 responses were submitted from participants during the 14 weeks PRES 2019 was open between September and the end of December 2019.
Some of the key highlights were:
Participants
Please click on the relevant link below to complete the survey online, or click on the 'PDF' link further down, if you would like to download a printable copy of the survey to complete and post to us.
You won’t be asked for your name or personal details and anything you say will be kept private and no one will know which answers are yours.
Online survey for ADULTS and over 16s
Online survey for children 0-6 years old
Online survey for children 7-11 years old
Online survey for children 12-15 years old
Site staff should inform participants of the answers to the following three questions before participants complete the online surveys:
Staff may use the URL slips below to help with this or simply include title and study number (IRAS or CPMS) in email correspondence to participants.
If you have a query about completing our surveys, or would like more information about PRES, please e mail: christine.menzies@nihr.ac.uk