Patient Record of Interest in Research Phase 1
We are starting to create a list of people with MND (PwMND) who are interested in taking part in research. If as a PwMND you are interested in getting involved in research please go to the MND Association website here.
Why is this being created?
DeNDRoN in collaboration with the Motor Neurone Disease Association (MND Association) have become aware of the requirement for a central list of people affected with MND who are keen to participate in research. Therefore the MND Association have formulated a process whereby People with MND can indicate their interest to participate in research. Inclusion in this is optional for PwMND and does not guarantee that they will be included in future research projects.
This facility will recruit PwMND across England, Wales and Northern Ireland, collecting information which will allow a basic search to review eligibility criteria for research studies. This will enable DeNDRoN in conjunction with the MND Association to identify suitable participants for approved researchers looking for specific people to take part in their work.
What information will the patient record of interest in research contain?
PwMND with a diagnosis of any form of MND (including ALS, PLS, PMA) are eligible to join the patient record of interest in research and are asked to provide the following details:
Name
Address
Phone/email
Age
Gender
Date symptoms started
Date of Diagnosis
Type of Diagnosis (ALS, PB, PLS, PMA, familial, sporadic, etc)
How researchers can gain access to this information?
PwMND are made aware that being on the patient record of interest in research does not automatically make them eligible to take part in research and that even when they contact the researcher they will still be required to meet all the criteria for inclusion/exclusion within the study/trial. This record is purely a method of bringing together researchers and volunteer participants to facilitate both parties achieving their objectives.
For more information about the application processes please see the ‘researcher’s application process for MND patient record of interest in research’ flowchart below.
Should you want to apply for potentially eligible PwMND for your study please complete the application form and return to h.hollinger@sheffield.ac.uk, this can be downloaded here.
