A Bit of Background Information About Our Group By Dorothy Moore and Fatima Kakkar
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1987 - The Federal Center for AIDS
In November 1987, the Federal Center for Aids created a “Working group on Pediatric HIV Infection”. The Group met in Montreal, and was chaired by Normand Lapointe and Kimberly Elmslie. Discussion revolved around what was then known of the clinical presentation, prognosis and epidemiology of HIV infection in children, especially regarding perinatal acquisition; the problems with laboratory diagnosis in the newborn (options were viral culture, p24 antigen, and comparison of infant and maternal HIV antibody profiles); criteria for HIV testing, and issues of confidentiality and discrimination resulting in parents’ refusal to have children tested. Attendees from various provinces presented their experiences. At that time, most children with HIV had acquired it from blood products. Most cases of perinatal transmission were from Quebec, with a handful of cases detected elsewhere in Canada.
In November 1987, the Federal Center for Aids created a “Working group on Pediatric HIV Infection”. The Group met in Montreal, and was chaired by Normand Lapointe and Kimberly Elmslie. Discussion revolved around what was then known of the clinical presentation, prognosis and epidemiology of HIV infection in children, especially regarding perinatal acquisition; the problems with laboratory diagnosis in the newborn (options were viral culture, p24 antigen, and comparison of infant and maternal HIV antibody profiles); criteria for HIV testing, and issues of confidentiality and discrimination resulting in parents’ refusal to have children tested. Attendees from various provinces presented their experiences. At that time, most children with HIV had acquired it from blood products. Most cases of perinatal transmission were from Quebec, with a handful of cases detected elsewhere in Canada.
In June 1988, Stan Read sent a memo to the “Pediatric AIDS group” announcing “After considerable discussion with Burroughs Wellcome and the Health Protection Branch, everyone has agreed to allow the use of azidothymidine, on a compassionate basis, in HIV infected children under the age of 13….” This was the start of a new era. Previous therapy had been supportive and palliative. A second meeting of the “Working group on Pediatric HIV Infection” was held in Montreal in November 1988, with visiting speakers Gwendolyn Scott, Wade Parks and Stéfane Blanche.
Members listed are Tom Bowen, Gilles Delage, Pierry Dery, Joanne Embree, Scott Halperin, Catherine Hankins, Susan King, Normand Lapointe, David Matheson, Dorothy Moore, Ross Pennie, and Sydney Segal, with Philip Banister and Kimberly Elmslie from Health Canada. Again, current knowledge about pediatric HIV was discussed, with a focus on perinatal infection. Asymptomatic perinatal infection was thought to be rare, if it existed at all. Diagnostic difficulties were re-iterated. HIV viral culture and p24 antigen testing were specific but not sensitive enough. PCR testing was being developed but not yet standardized. Protocols underway in the United States - use of AZT in infancy, a phase 1 study of DDC, treatment with IVIG, a study of AZT in third trimester of pregnancy - were presented.
Subsequent to that there were various communications between members of the “Working group on Pediatric HIV Infection” but no further meetings.
1991 – The Canadian Infectious Diseases Society and PICNIC
A Canadian Infectious Diseases Society workshop was held in February 1991, at which Susan King proposed a survey of the burden and pattern of perinatal HIV illness in children in Canada. A questionnaire was subsequently developed by Susan King and Ross Pennie, sent out in early March to tertiary care pediatric centers, and the data presented to the Canadian Association for HIV Research meeting later that month. Twelve centers in 7 provinces provided data on 160 cases (38 deceased, 52 alive and infected, 60 status P0, and 10 with insufficient information to classify).
Dr. King repeated the survey in the spring of 1992 and data from the two years submitted for publication in early 1993 under the name of the “Canadian Paediatric AIDS Research Group (CPAR) of the Paediatric Investigators Collaborative Network of Infections in Canada (PICNIC)”. This was the first report describing the burden of perinatal HIV in Canada. By May 1992, 13 centers in 7 provinces had reported 220 known or presumed cases, of which 45 were deceased, 66 alive and infected, 45 P0, and 64 sero-reverters. The group listed on the publication include: Frank Duff, Susan King, Normand Lapointe, Stanley Read, Jack Forbes, Upton Allen, Robert Bortolussi, Francois Boucher, Joanne Embree, Janet Gilmore, Taj Jadavji, Dorothy Moore, Rob Morris, Heather Onyette, Mohan Pai and Wendy Vaudry (Duff et al, Can J Pub Health 1994; 85: 239).
Subsequent to that there were various communications between members of the “Working group on Pediatric HIV Infection” but no further meetings.
1991 – The Canadian Infectious Diseases Society and PICNIC
A Canadian Infectious Diseases Society workshop was held in February 1991, at which Susan King proposed a survey of the burden and pattern of perinatal HIV illness in children in Canada. A questionnaire was subsequently developed by Susan King and Ross Pennie, sent out in early March to tertiary care pediatric centers, and the data presented to the Canadian Association for HIV Research meeting later that month. Twelve centers in 7 provinces provided data on 160 cases (38 deceased, 52 alive and infected, 60 status P0, and 10 with insufficient information to classify).
Dr. King repeated the survey in the spring of 1992 and data from the two years submitted for publication in early 1993 under the name of the “Canadian Paediatric AIDS Research Group (CPAR) of the Paediatric Investigators Collaborative Network of Infections in Canada (PICNIC)”. This was the first report describing the burden of perinatal HIV in Canada. By May 1992, 13 centers in 7 provinces had reported 220 known or presumed cases, of which 45 were deceased, 66 alive and infected, 45 P0, and 64 sero-reverters. The group listed on the publication include: Frank Duff, Susan King, Normand Lapointe, Stanley Read, Jack Forbes, Upton Allen, Robert Bortolussi, Francois Boucher, Joanne Embree, Janet Gilmore, Taj Jadavji, Dorothy Moore, Rob Morris, Heather Onyette, Mohan Pai and Wendy Vaudry (Duff et al, Can J Pub Health 1994; 85: 239).
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1992 – The Canadian HIV Trials Network
In 1992, members of CPAR received a letter from Jack Forbes stating: “Several investigators interested in Paediatric HIV clinical research have expressed interest in participating in a workshop to discuss multicentre trials projects in Canada. The Canadian HIV Trials Network is prepared to facilitate this one day workshop to be held on Wednesday May 27 in Vancouver in conjunction with the 2nd Annual National Conference on HIV/AIDS Research ..." |
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The meeting was co-chaired by Drs. Susan King and Jack Forbes. Dr. King reported on the perinatal HIV survey. Six research proposals were presented: “Comparative trial of ZDV alone with ZDV plus DDI” (Forbes); “Anaemia in children receiving ZDV: Erythropoietin deficiency and treatment” (Allen); “Study of whey protein supplementation in wasting syndrome” (Baruchel); “Study comparing side effects of cotrimoxazole and aerosolized pentamidine” (King); “Epidemiological study of pediatric HIV-related malignan-cies” (Baruchel). “Salivary immune response to commensal oral flora” (Milnes) .
There was discussion about the name and structure of the group. “The Canadian Pediatric HIV Research Group” was the most popular name. Suggestions for structure included a subgroup of PICNIC (as it had been), a subgroup of the Canadian Paediatric Society, or a subgroup of the Canadian HIV Trials Network. Network support would facilitate trials and help with communications, organization and secretarial services would be greatly appreciated.
Jack Forbes and Susan King would liase with the Network to see what would be possible. PICNIC and CPS were felt to be inadequate as not all participants belonged to these organizations. Present were: Upton Allen, Sylvain Baruchel, Francois Boucher, Sharon Cassol, Jack Forbes, Caroline Fortier, Janet Gilmore, Taj Jadavji, Yong Kang, Susan King, Sahib Khan, Normand Lapointe, Alan Milnes, Marc Lebel, Dorothy Moore, Janet Raboud, Stanley Read, Joel Singer, John Spika, Wendy Vaudry, George Wells.
In January 1993, at the Canadian HIV Trials Network meeting, the “Pediatric HIV Working Group” met, again chaired by Susan King and Jack Forbes. Updates on existing protocols were presented and new studies proposed. The annual survey of perinatal HIV was to continue. It was suggested that a Steering Committee and an Administrative Committee should be set up. Susan King and Jack Forbes would act as co-chairs and Normand Lapointe, Stan Read, Upton Allen and Sylvain Baruchel would form the Steering Committee. The name of the group would be the Canadian Pediatric AIDS Research Group (CPAR).
In May 1993 the “CTN’s Pediatric Committee” met again during CAHR. Later that year it was suggested that a system of centralized data collection for subsequent surveys of perinatal HIV be set up, using the resources and expertise of the HIV Clinical Trials Network. In 1994, CTN became involved in the management of the perinatal database. Data from this database has been submitted to the Public Health Agency of Canada HIV/AIDS Surveillance section from 1999 onwards.
In May 1993 the “CTN’s Pediatric Committee” met again during CAHR. Later that year it was suggested that a system of centralized data collection for subsequent surveys of perinatal HIV be set up, using the resources and expertise of the HIV Clinical Trials Network. In 1994, CTN became involved in the management of the perinatal database. Data from this database has been submitted to the Public Health Agency of Canada HIV/AIDS Surveillance section from 1999 onwards.
Original logo - circa 1998
At the May 1994 meeting of the Canadian Paediatric AIDS Research Group it was noted that the group had now been established for two years and was successful in working collaboratively. It was proposed that there be a written description of the objectives of the group, its membership, and administrative processes including electing of co-chairs and Steering Committee. These were drafted by Jack Forbes and Susan King, distributed in June 1995 and finalized in July 1996. The acronym CPARG was in use by May 1997 and Dr. Ben Tan designed a logo in 1998.
1987-2017
In the thirty years since the start of the epidemic, CPARG has made tremendous progress in the eradication of mother-to-child HIV in Canada, optimizing access to care and antiretroviral therapy (ART) for of HIV infected pregnant women and their children. The Group brings together health care providers and researchers in pediatric and perinatal HIV, with the mandate of optimizing research, surveillance, clinical care, and prevention, of pediatric HIV infection in Canada.
CPARG meets annually during the Canadian Association for HIV/AIDS Research (CAHR) conference, holds regular tele-conferences, and maintains an email communication between members. Through its educational initiatives, research projects, and creation of best practices and guidelines, CPARG has become the primary pediatric HIV resource in Canada for clinicians, patients, and community members.