Find rare disease research projects

UK Clinical Trials Gateway

Lists clinical trials (a type of research) currently open to recruitment in the UK.


Provides information on ongoing and unpublished research projects focused on a rare disease or on a group of rare diseases. It includes research which is funded by a funding body with a scientific committee, or issued from national research funding.

The website requires you to enter your requested disease name or gene name to access this information.

Health and Care Research Wales Research Directory

A comprehensive database of the health and social care research activity taking place across Wales. It includes eligible non-commercial and industry-funded health and social care research studies, Pathway to Portfolio studies, biobanks and research data registries.

NIHR Research Studies

Funded through the Department of Health and Social Care in England to improve the health and wealth of the nation through research.

Last year (2017/2018) the NIHR supported 175 studies on Genetics. The website includes information on research into disease areas which may include specific rare conditions;

  • Anaesthesia, Perioperative Medicine and Pain Management
  • Cancer
  • Cardiovascular Disease
  • Children
  • Dementias and Neurodegeneration
  • Dermatology
  • Ears, Nose and Throat
  • Genetics
  • Haematology
  • Mental Health
  • Metabolic and Endocrine Disorders
  • Musculoskeletal Disorders
  • Neurological Disorders
  • Opthamology
  • Renal Disorders
  • Reproductive Health
  • Respiratory Disorders

Remember that it is always your choice to take part in a research study and if you do decide to take part in a study, you can change your mind at any time.

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