About Rare DiseasesWhat is a Patient Registry?
What is a patient registry?
  • What is a patient registry?

    A patient registry is a database of ongoing and systematic collection of medical conditions (including clinical symptoms and genetic information), diagnoses and treatment methods for individual patients and groups of patients. This information will help researchers to obtain more accurate first-hand information on related diseases and facilitate the recruitment of patients for clinical testing of drugs to assist in the development of new drugs or therapies.

    Patient registries are particularly important for rare disease research because the data in the registries can raise the healthcare professionals and researchers' awareness of rare diseases, and patients who join the patient registry are more likely to connect with researchers and have the opportunity to participate in clinical testing of drugs, which can facilitate the development of new treatment options and drugs.

    Patient registries can also facilitate the government departments to obtain empirical data as the grounds for decision-making in public health and resource allocation.

  • In Hong Kong, the establishment of a patient registry is mainly driven spontaneously by patient groups and the Government has not played a leading role. Therefore, when considering participating in any patient registry scheme, patients should first clarify the following with the organisation that owns and manages the patient registry:

    • Whether the organisation’s patient registry has participation and support of qualified experts such as specialists, geneticists, medical ethics experts, etc.

    • The organisation’s privacy policies and measures: for example, the purpose of collecting the patients’ personal data, the use of the data, how the data are kept and who has access to the relevant data;

    • Ways to inquire about issues relating to the patient registry; and

    • Participant’s rights (e.g., the right to withdraw from the registry at any time, the right to refuse to participate in any clinical drug test, etc.).

    Patient registries that have been created with experts’ participation and support include:

    Hong Kong Spinocerebellar Ataxia Patient Registry
    Enquiries Hotline:2336 5639 (Hong Kong Spinocerebellar Ataxia Association)

    Hong Kong Neuromuscular Disorders Patient Registry
    Enquires Email:michaelykl@connect.hku.hk (Mr. Michael Yu)

    Registry of Hereditary Retinal Diseases
    Details:PDF(in Chinese Only)
    Enquires:2708 9363 (Retina Hong Kong)

  • Community groups wishing to establish a patient registry should pay attention to the following:

    • In order to ensure the credibility and recognition of the patient registry, support and participation of some qualified experts like specialists, geneticists, medical ethics experts, etc. are essential in the preparation stage and operational process

    • All the personal data in the patient registry must be kept and processed with caution and in accordance with the Personal Data (Privacy) Ordinance.

    • The authority to access the patient registry should be established. Usually only those who have been specially trained can have access to the patient registry.

    • A governance committee or management board may be set up to seek expert advice, and to decide on the use and sharing of information. However, information that can be used to identify individuals must be kept confidential.

    • Enquiry channels should be available in order to answer patients’ questions about joining the patient registry.

    Photo Source: https://www.carta.healthcare/what-is-a-patient-registry/