About Patient Registry
Having a National Patient Registry is also very useful for any organization. Being able to compare information among different part of the country can be helpful when lobbying for improved care. A National Patient’s Registry is set up and maintained by the patient organization in the country. It is simple a database of patient names, addresses, ages, and diagnoses. Registry organized by patient groups provides mostly demographic data and create an active, effective communication network. A patient-run registry can act as a catalyst to trigger interest and motivation for doctors and Ministries of Health. Much of the data collected for a patient-run registry can be complementary with the data found in a medical registry. A patient-run registry can be an outreach tool – building a registry helps to build the patient community. It helps to determine needs of members and it can map out their geographical distribution. A patient registry provides the patient organization with a network for quick distribution of educational material and notices, but will not usually have access to health outcomes or treatment data.
National Patients Registry for Pakistan is an effort to make centralized and credible database of people identified with hemophilia, von Willebrand disease, and/or other inherited bleeding disorders. This is a web-based National level Patients Registry that could be accessed from anywhere and anytime. Pakistan Hemophilia Patient Welfare Society collected data from different part of the country under WFH funded project in 2014 but that was just an exercise of collecting and compilation of data on paper. We intend to make this data available online for its effective use. As a next step we developed web-based software with the support of NNHF and keep this data for an entire country to avoid duplication of names/numbers. This “National Patients Registry” of HFP consists of both patient’s information [demographic details] and Clinical part [diagnostic details]. This centralized web-based National Patients Registry will help HFP in monitoring trends in health, allocating resources/priority setting, improving the purchasing process, serving as a distribution mechanism, helping establish a communication network and ensuring better national data. Before development of this National Patient Registry different HFP-Chapters and HTCs were maintaining their own patient’s record on papers/registers but now all the date is available on this web-based software and could be accessed from any part of the globe.