National cohort study of patients with cytogenetic disorders_v1.
Research type
Research Study
Full title
National cohort study of mortality and cancer incidence in patients with cytogenetic disorders.
IRAS ID
303356
Contact name
Michael Jones
Contact email
Sponsor organisation
The Institute of Cancer Research
Clinicaltrials.gov Identifier
N/A, N/A
Duration of Study in the UK
55 years, 0 months, 0 days
Research summary
This study has already been running, with ethics and CAG approval, for 25 years. In order to transfer this study to a new Chief Investigator, with no other changes, we have been asked to complete this form, to produce IRAS registration needed for the transfer.
This is a long-term cohort study, following up on a large scale the long-term consequences of chronic diseases and their treatments - specifically of cytogenetic disorders and several paediatric endocrine disorders.
Because modern treatments have led to greatly improved survival of patients with chronic diseases, the issue of long-term side-effects of the diseases has become an important one for advice to patients and (for children) to their parents. It is also important to clinicians deciding about treatment of diseases and the balance of benefit vs. side-effects and complications, and to the Health Service, because of the costs accruing for continued follow-up and care of these patients and the planning required to take account of long-term consequences and to plan strategies, where possible, for their prevention and early detection. There is a great desire on the part of parents of children born with cytogenetic abnormalities and endocrine diseases to know about their child’s prognosis. The conditions, are ones where there is reason to be concerned about long-term mortality and cancer risks, and a deficiency of large-scale information about this.
REC name
London - Central Research Ethics Committee
REC reference
22/LO/0239
Date of REC Opinion
1 Jun 2022
REC opinion
Further Information Favourable Opinion