JDR_cmykWelcome to the Join Dementia Research Glossary. You may read a lot of words and phrases that you don’t recognise – but don’t worry!

We’ll explain all the important language that surrounds taking part in dementia research.


Account:

Every person who uses Join Dementia Research needs an account to log in – just like accessing your e-mails, or Facebook.

Clinical Research: 

Clinical research is medical research that involves people to test new treatments and therapies. Current research ranges from clinical trials of new treatments, to surveys about what works in improving quality of life for people with dementia and their carers.

Different types of studies:

  • Diagnostic studies or trials determine better tests or procedures for diagnosing a particular disease or condition.
  • Prevention studies or trials look for better ways to prevent a disease in people who have never had the disease or to prevent the disease from returning.
  • Quality of life studies/trials explore and measure ways to improve the comfort and quality of life of people with a chronic illness.
  • Screening studies/trials test are the best way to detect certain diseases or health conditions.
  • Treatment trials studies/trials test new treatments, new combinations of drugs, or new approaches to surgery or radiation therapy for example.

Eligible:

Researchers occasionally need volunteers who meet certain conditions, called the Inclusion and Exclusion CriteriaMaybe they need someone with a specific condition, or of a certain age. You can share this information on your Profile, and see if you are eligible.

Inclusion and exclusion criteria:

These are factors that allow or exclude someone to participate in a clinical trial. See Eligible.

Matched:

A ‘match’ means the information you provides matches a study’s basic exclusion and inclusion criteria.

Principal Investigator: 

A Principal Investigator is a doctor, scientist or nurse who leads the clinical research team.

Profile:

This is where the information you share is available. Researchers will use this to see if you are Eligible for their studies. Have you signed up for someone else? You can manage a number of profiles from your account.

Recruited:

This means you are participating or taking part in a study.

Representative:

A Join Dementia Research representative is anyone who has signed someone else up to the service.

Volunteer:

A Join Dementia Research volunteer is anyone who has signed up to the service.  They do not necessarily need to take part in a study, just have registered their interest.