Join GRAMPUS-CF by following the steps below

  1. Click the button below to go to the GRAMPUS-CF study sign up page

2. Read the participant information sheet

University of Nottingham research participation form for a study on cystic fibrosis symptoms, involving remote recruitment for adults aged 12 and older.

3. Complete screening questions to check you are eligible. Provide an email address and your name

University of Nottingham and GRAMPUS-CF logos on a webpage asking for age and a button labeled 'Next Page >>'.
Online consent form for a gut research study on cystic fibrosis, including statements for participants to confirm understanding and agreement, with checkboxes for consent, and a space for full name.

4. Check your email for your link to consent and register

What does taking part involve?

Once you have read the study information (this link will open a Microsoft Word document) and if you decide to take part, you will be asked to provide electronic consent confirming that you understand what is involved.

You will then receive an email with a link to complete a series of questions and questionnaires over 7 days.

We would like you to repeat this process at 6 and 12 months.

Children and young people aged 12-15 years, should only take part with consent from their parent or guardian. The online questionnaires are not designed for people younger than 12 years. If you are under 12 please do not use the sign up.

Can I do more to help?

Person in MRI Scanner

Some UK patients (in Nottingham or Leeds) may want to be part of group B (blood and poo samples) and group C (MRI scan). If you would like to know more about these parts of the study please tick the appropriate box in the consent screen and indicate that you are happy for us to use your email to contact you about this. 

Currently only people who attend the Nottingham or Leeds CF children’s centres are able to take part in groups B or C.

Recruitment to groups B and C is limited.  Once we reach our target will stop recruitment and even if you are willing, we may not be able to take further samples.

What to do next

Firstly you will also be asked some information about yourself.

Day 1: You will be asked to complete a series of questionnaires:

  1. seven GRAMPUS-CF questions (GRAMPUS-7),

  2. a general gastrointestinal symptom measures (GSRS),

  3. a general measure of constipation (PAC-SYM) and

  4. 10 questions asking about different tummy symptoms you may have experienced and the impact of these on your daily life over the last 24 hours (CF Tummy Tracker).

  5. Ask you about food and drink consumed in the last 24hours

Days 2 to 7: You will receive an email each day to complete the 10 CF Tummy Tracker questions

Day 8 : Final email for baseline will ask you to complete the series of questionnaires from day 1 (GRAMPUS-7, GSRS, PAC-SYM) one last time for this stage.

Follow-up at 6 and 12 months

We would like you to repeat this process at 6 and 12 months. We will send you an to complete the questionnaires at the appropriate times.

Abdominal symptoms assessment form with options for severity levels and reset buttons for discomfort, pain, bloating, and cramps.
Screenshot of a digital questionnaire with instructions and a question about bowel movements, asking how many times per day the person experienced bowel movements in the last week.
Screenshot of a web page titled 'Welcome to the Tummy Tracker' instructing mobile phone users to place their phone in landscape mode while filling out questionnaires. It includes a section asking about tummy discomfort in the last 24 hours with options ranging from 'A lot' to 'None' and a 'reset' link at the bottom.
Baseline questionnaires timeline
6 and 12 month questionnaires timeline

What to expect during the study

You are welcome to contact the study team at any point before, during or after the study using the study email address grampuscf@nottingham.ac.uk about any questions you have relating to the study. 

The study is otherwise led by the participant which means unless you choose to, you will have minimal direct contact from the study team. You will get emails from the to help remind you to collect the data.

If you have any technical questions you can also contact uMotif, who we are working in partnership with at GRAMPUS-CF@umotif.com

What happens after the study

Your participation will end after 12 months.

We will share our findings on the GRAMPUS-CF website and through social media. We will present our work at CF conferences to share with other researchers and clinical teams and publish our findings in scientific journals

Thank you for taking part in this important piece of CF research

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Thank you for taking part in this important piece of CF research 〰️