DHICE Project (Databases for HIV: Integration, Collaboration, Engagement)
DHICE is a new project to encourage collaborative working practice between different HIV cohort projects in the UK.
Memory Sachikonye, based at i-Base, is the Community Liaison Co-ordinator with the project. Memory works with database coordinators and community organisations to:
- Identify and document patient concerns relating to database research, including the use of personal information, and to work to resolve any issues if they arise.
- Increase the involvement of community members in study design and management (e.g. through steering committee membership etc).
- Raise the profile of HIV research in the community, especially cohort studies that are database projects.
A community training day for community groups on the management and benefit of HIV databases is planned this summer. This will increase community awareness of this important area of research. It will also include training for community members who want to participate on the steering committees of UK studies.
Links to important HIV database studies
The following important studies are based on databases.
- ART CC (ART Cohort Collaboration)
The ART Cohort Collaboration was established in 2001 with the purpose of examining the prognosis of HIV-infected, antiretroviral drug-naive patients starting antiretroviral therapy (ART).
- CASCADE (Concerted Action on Seroconversion to AIDS and Death in Europe)
This is collaboration between the investigators of 23 cohorts of persons with well-estimated dates of HIV seroconversion. Seroconverters are enrolled into the individual cohorts locally and nationally and are typically followed up life-long.
- CHIPS (Collaborative HIV Paediatric Study)
CHIPS is a multi-centre cohort study of HIV infected children in the UK and Ireland and aims to enhance the exchange of information and expertise between centres in order to promote standardised high quality paediatrician-led care of all HIV-infected children in the UK and Ireland.
- D:A:D Study (Data Collection on Adverse events of Anti-HIV Drugs)
D:A:D is a prospective multi-cohort study that includes over 33,000 HIV-positive people in Europe, Australia and the US, under active follow up. This collaborative cohort was established to look at potential side effects from using combination therapy. An important ongoing study to looks at the incidence of myocardial infarction (heart attacks) on combination therapy and any potential links with drug classes or individual drugs.
The EuroSIDA study is a prospective observational cohort study of more than 16.505 patients followed in 103 hospitals in 32 European countries plus Israel and Argentina. The main objective of the study is to assess the impact of antiretroviral drugs on the outcome of the general population of HIV-infected patients living in Europe.
The UK HIV Drug Resistance Database was set up in 2001 as a central repository for resistance tests performed as part of routine clinical care throughout the UK. By the end of 2008 over 51,000 test results have been received and organised. Around 90% are in the form of viral gene sequences.
The National Study of HIV in Pregnancy and Childhood (NSHPC) is the confidential national (UK and Ireland) active reporting scheme for (i) pregnancies in HIV-positive women, (ii) babies born to HIV-positive women, and (iii) children with HIV infection and/or AIDS.
This database contains information on over 29,000 individuals from some of the largest clinical centres providing medical care to HIV-infected individuals in the UK.
The objectives of the cohort are to describe the uptake of and response to highly active antiretroviral therapy (HAART), to identify factors associated with virological and immunological response to HAART and to describe changes over time in the frequency of AIDS-defining illnesses.
A register of HIV-positive people who have had a negative antibody test within 3 years of their first antibody positive test (seroconverters) set up in the UK to monitor the range of time taken for HIV disease to progress after infection. The most recent analysis reported that 25% people needed treatment within 2 years of infection and 25% still didn’t need treatment after 10 years. Everyone else was between 2-10 years.
Links to database surveillance systems
- MHRA (Medicines and Healthcare products Regulatory Agency)
The MHRA was set up in April 2003 from a merger of the Medicines Control Agency and the Medical Devices Agency. The MHRA is the government agency which is responsible for ensuring that medicines and medical devices work, and are acceptably safe. This includes maintaining a database of case reports on side effects and drug toxicity.
- SOPHID (Survey of Prevalent HIV Infections Diagnosed)
SOPHID is a cross-sectional survey of all people who access HIV-related care at an NHS site in England, Wales and Northern Ireland each year.