CLAN met this week to formally approve a final report of the CLIP (CAH Living In Pakistan) Project, conducted in Pakistan in 2016-17, with thanks to a generous donation from Pfizer Australia and the tireless efforts of Prof Jamal Raza (Director of the National Institute of Child Health in Karachi) and Dr Rabia Baloch (CLAN’s fantastic Community Development Officer at NICH), and we are all very proud to share the final report with you.
The project has been very successful overall. There have been a number of outcomes in particular that offer great hope not only for the CAH Community of Pakistan, but also for CLAN’s work in the Asia Pacific region more broadly. These achievements include:
- Development of a digital, online CAH register - which now operates across Pakistan (with support from the newly established SPED - Society of Pediatric Endocrinology and Diabetes of Pakistan), and will enhance future research into and understanding of CAH at a national level. In addition, the register is now being considered for use in Australia (achieved through interactions CLAN has as co-chair of the APPES-CLAN Equity Working Group (ACE WG), with special thanks to ACE WG and APEG member Prof Maria Craig at Children’s Hospital Westmead). Development of the CAH Register through the CLIP Project is incredibly timely as it turns out - Australia is on the cusp of implementing nation-wide Newborn Screening for CAH for the first time (HUGE news for the Australian CAH Community!), and offers strategic opportunities to ensure all families of newborn babies diagnosed with CAH in Australia benefit from standardised approaches. CLAN’s hope is that training families in the use Solu-Cortef during adrenal crises could be systematically implemented as one such initiative, and we believe such an outcome could be a direct outcome of this grant.
- Development of a mobile phone app - this innovative tool is enhancing the capacity of paediatric endocrinologists and general paediatricians in Pakistan to care for children with not just CAH, but also a range of other endocrine conditions - notably diabetes (DM), hypothyroidism (CH) and osteogenesis imperfecta (OI). The ACE Working Group is again considering how this app might be expanded across the Asia Pacific region, and I cc my co-chair on the ACE Working Group as a courtesy (Dr Agustini Utari, from Central Java).
- Translation of new educational resources into Urdu - this has been an especial achievement! At the start of this project, CLAN was blissfully unaware of just how incredibly challenging it can be to translate medical resources into Urdu! After much time and effort however, we now have a very effective and speedy process in place, and will soon finish additional resources for CH, OI and DM that will benefit families in both Australia and Pakistan
- New partnerships - the CLIP Project has provided CLAN with the opportunity to form a new and important relationship with APMA (the Australia Pakistan Medical Association - an organisations linking us to a network of over 1200 Pakistani-born doctors across Australia!) and also connect with the Pakistani Consul General in Australia. These new networks have assisted CLAN in many ways, and provide exciting opportunities for future collaborations in Pakistan
Moving forward, CLAN and our many partners (notably the many paediatric endocrinologists we work with in Pakistan, Australia and the broader Asia Pacific region) are keen to continue working together and driving change for children living with CAH and other endocrine conditions in our region. The pivotal role that Pfizer Australia has played in allowing us all to work together to achieve long-held dreams is well acknowledged, and we would like to thank everyone at Pfizer Australia who made it possible.