Research Case Register

 

In order for new treatments to be developed, patients and their carers and relatives need to be kept informed and offered opportunities to take part in research and clinical trials. We are developing a patient and carer register to keep up-to-date information about people with memory problems such as dementia or mild cognitive impairment, or movement disorders such as Parkinson's disease, who are willing to take part in research. This will act as a clinical resource for researchers looking for participants to take part in their study.

Below you will find information about how to get involved with the register as a participant, as well as information for those already on the register, and information for researchers looking for potential participants.

There are three NEURODEM centres across Wales, so if you are interested in being involved with the register, please contact your nearest centre:

Bangor:

NEURODEM Research Case register,

Bangor University,

Ardudwy,

Normal Site,

Holyhead Road,                                    

Bangor.

LL57 2PX

Tel: (01248) 382598 / 382226

Swansea:

NEURODEM Research Case Register,

CRC Cymru,

Room 235, Grove Building,

Swansea University,

Swansea.

SA2 8PP

Tel: (01792) 602097

Cardiff:

NEURODEM Research Case Register,

CRC Cymru,

Third Floor,

12 Cathedral Road,

Cardiff.

CF11 9LJ

Tel: (02920) 196851

Or send us an email: neurodem@bangor.ac.uk

*New to the website*

Have a look at our newsletter online!

NEURODEM Research Case Register newsletter January 2010 (English)

NEURODEM Research Case Register newsletter January 2010 (Welsh)

 

For those interested in joining the register:

Do you suffer from memory problems such as dementia or mild cognitive impairment; or do you suffer from a movement disorder such as Parkinson's disease or Huntington's disease?

Are you interested in contributing to the latest research to find a prevention, cure or cause for your condition?

Join our Research Case Register!

The NEURODEM Research Case Register is a database of people with conditions such as dementia or Parkinson's disease who wish to be informed about, and given the opportunity to take part in research into their conditions. By joining the register, there is no obligation to take part in any research study. All data will be kept confidential and no details that could identify you are saved on the database.

To have a look at our information leaflet, please click on the link below:

Participant and Carer Leaflet (English)

Participant and Carer Leaflet (Welsh)

If you have read the information leaflet, and would like to join the register, please fill in the permission slip below and send it via email or by post to your nearest NEURODEM centre. We will send you a registration form to fill in, with a pre-paid envelope for you to return it to us.

Permission Slip (English)

Permission Slip (Welsh)

 

For those already on the register:

Thank you joining the NEURODEM Research Case Register!

If you change your address at any time whilst on the register, please let us know so that we can make sure you receive your annual newsletter and notification of research projects. You will find a change of address form below which you can either email back to us, or post to your nearest NEURODEM centre.

Change of address form (English)

Change of address form (Welsh)

Please remember that there is no obligation to take part in any of the reseach projects that we bring to your attention, and just beause you are on the register does not guarantee that you will be called to take part in a study. You are free to withdraw from the register at any time without giving a reason. If you wish to withdraw or discuss your or your relative's participation then please do not hesitate to contact us.

 

For researchers wishing to recruit participants:

Are you looking to recruit participants with a neurodegenerative condition such as dementia or Parkinson's disease?

Let us help you!

It is often difficult and time consuming for clinicians and researchers to identify suitable patients for a range of clinical trials and other studies. For this reason we are working closely with a number of clinics and inviting patients with dementia or other neurodegenerative conditions such as Parkinson's disease to join the NEURODEM Research Case Register, a database of patients and carers who are interested in being informed about and offered opportunities to take part in research into their conditions. This will serve as a clinical research resource from where we can identify suitable patients from the register for any research studies/trials you wish to recruit for in collaboration with NEURODEM.

To have a look at our information leaflet, please click on the link below:

Clinician and Researcher Information Leaflet (English)

Clinician and Researcher Information Leaflet (Welsh)

If you have read the information leaflet and would like to use the register to identify potential participants, please fill out the form below and return to your nearest NEURODEM centre.

Participant identification form (English)

Participant identification form (Welsh)

 

If you have any queries about anything to do with the NEURODEM Research Case Register, please do not hesitate to contact your nearest NEURODEM centre.