The CHI India registry consists of a series of online surveys, with questions ranging from demographic details, patient history, biochemical investigations and treatment details and experience sharing. The questions of the survey have been carefully curated by the executive committee of the CHI India consortium.
Either the treating clinician or the patients and their legally authorized guardians can participate in the CHI India registry by clicking the “Join the CHI India registry”. This will take them to the “participant information sheet” consisting of the information about the registry and its purpose. By confirming to have read the “participant information sheet” the participants will be directed to consent form for participating in the registry. The consent form consists of a series of statements about informed, voluntary participation in the registry. After an authorized consent, clinicians / patients / parents can enter their information and also view integrated / pooled data of all the participants without identifying details. The participants can also join to be notified further on the events and activities of the consortium. Participants can join the registry from anywhere in the country, and can also choose to withdraw at any time.
The following points may be helpful before joining the registry:
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The CHI India registry can be filled by the clinician (meaning the treating doctor), parents in case of minors, guardian or legally authorized representative, patients in case of age > 18 years on the date of filling the registry.
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The Principal Investigator (PI) is the primary researcher responsible for conducting the survey, compiling, analyzing and producing reports without any identifying details. He is responsible for the safety and ethics of the registry in accordance with the Institutional Ethics Committee approval.
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Co-Investigators are the researchers who support, guide and look after the work of the PI
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The CHI India consortium is an association of clinicians, geneticists, researchers, parents and other stakeholders. The executive committee members list responsible for designing the survey can be found here.
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All documents of the survey including the “participant information sheet”, “consent form” and questionnaires have been approved by the Institutional Ethics Committee – 2 (R&D No.: IEC/BU/137/Faculty/224/93/2022; Dated: 04/10/2022) registered with the National Ethics Committee Registry for Biomedical and Health Research, Department of Health Research, Ministry of Health & Family Welfare, Government of India (File No. – EC/NEW/INST/2021/592).
