Health and Care Research Wales who fund the Wales Gene Park offer a free training programme to make sure members of the public are prepared for their involvement in re-search. They define different ways that you can be involved or take part in research as:
Where members of the public are actively involved in research projects and research organisations. The research is carried out with or by members of the public, for example, reviewing information given to patients about research.
Where information and knowledge about research is provided and shared, for example, at a research conference.
Where people take part in a research study, for example by giving a blood sample or completing a questionnaire.
A rare disease is defined as a disease or condition that affects fewer than 1 in 2000 people. There are between 6000-8000 rare conditions which affect over 175,000 people collectively in Wales, as 1 in 17 people will be affected by a rare disease at some point in their life.
The Rare Disease Research Portal has been developed to bring together studies focused on ra-re diseases, to provide a one-stop shop for patients, families, patient organisations, research-ers and health professionals who want to find out about opportunities to take part in research into
different rare conditions.
Studies will include opportunities to take part in research which mean you can:
• receive a new treatment
• answer questionnaires
• take part in interviews or focus groups
• give researchers permission to look at your medical notes
• give a blood or urine sample
If you would like to find out more about taking part in a research study for a specific condition or illness, you can speak to your doctor, nurse, or consultant.
You can also find out about opportunities to take part in research from a number of different online sources. The Rare Disease Research Portal includes links to rare disease research pro-jects from across the UK and also further afield. We are continuously updating information to ensure relevant and up-to-date studies are included, however, please get in touch if you would like to include details of a new study on the portal.