Search tips

  1. The search bar can be used to type in the name of your condition or the name of a study which is linked to the condition you are interested in.
  2. Once you have typed this information into the search bar, any studies that are relevant to you will appear in a list which will include more information about the study and how you can get involved. You will also have the option to sort the list in different ways; for example, A-Z
  3. Sometimes shortened versions of names for conditions may not get you to the information you need so please try using the full name of a condition if you know it, for example ‘tuberous sclerosis’ rather than the abbreviation ‘tsc’.
  4. The condition you are looking for may have more than one name and may be called a different name on the Gateway. If you are unsure, please search using words that may be linked to your condition, for example Adenosquamous carcinoma is a type of rare lung cancer. You can search using alternative terms like “Lung Cancer” or “Rare Lung Cancer”.
  5. If no studies appear when you use the search bar, there are still other places that you can search for research that might be relevant to you. Our section called ‘Joining Rare Disease Research‘ has links to other sites where you should be able to find information about relevant projects.
  6. Some of the studies will not have a contact person to get in touch with for further information about a study. This is because we have not been allowed to include this information on the Gateway. If the study you are interested in does not have a named contact person, please get in touch with your doctor/ health professional or GP and let them know the name of the study and that you would like to find out more about how you can be involved.
  7. You may find studies that aren’t looking at your specific condition but are still relevant to you and you may want to consider taking part. If you are unsure about whether a study is open to you, your doctor/ health professional will be able to advise you about whether you are able to take part.

Please get in touch if you have any feedback about the Gateway to share with us. We will be working hard to make improvements and increase the number of rare disease studies that are included so if you are aware of any projects which should be on the Gateway or we can help you find research into a condition which affects you or a family member, please let us know:

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