Regenerative Medicine and Stem Cells Technologies

The second meeting of the Irans National Council for the Development and Monitoring of HLA Registries and Cord Blood Banks was held at Ministry of Health and Medical Education (MOHME) with the presence of Dr. Pourfathollah, vice chairman of the council, Dr. Hamidieh, secretary general of the council, and other members of the council.

The second meeting of the Irans National Council for the Development and Monitoring of HLA Registries and Cord Blood Banks was held at Ministry of Health and Medical Education (MOHME) with the presence of Dr. Pourfathollah, vice chairman of the council, Dr. Hamidieh, secretary general of the council, and other members of the council. 
At the beginning of the meeting, Dr. Mohseni presented a report about the expert committees formed by the council secretariat. She said: "Specialized committees including the HLA registry committee, cord blood bank (CBB) committee, standardization committee, public relations and international affairs committee had several regular meetings." She expressed that these meetings resulted in provision of standards and requisite trainings for donor registration, provision of transplantation standards, preparation of checklists and entering updated information of CBBs, and development and update of the INSCDN website and the information databank of hematopoietic stem cell (HSC) donors.
Then, Dr. Monzavi provided a detailed report about the IT system infrastructures and facilities of INSCDN. He said: "To launch IT software system, resume and capabilities of numerous IT companies were evaluated, which ultimately lead to a suitable contract under the supervision of statistics and IT office of Iranian Ministry of Health. After signing the contract, different sections of the website including news and educational items were completed, and subsequently, information of the donors registered at Iranian registries and CBBs were entered into the system."
Continuing the session, Dr. Pourfathollah mentioned his concerns regarding the security of the IT systems and said: "Regarding the insertion of donors information into the system, access to patients demographics should be limited and that this information should be securely protected by encryption. Tests to assess the possibility of penetration to the IT system should be performed to ensure the security of the databank and to assure the system users as well as donors." With respect to Dr. Pourfathollahs remarks, Dr. Hamidieh emphasized: "In order to accomplish this goal, multiple layers of security have been maintained on the host server of the system."
Next, Dr. Monzavi presented another report on the situation of hematopoietic stem cell transplantation (HSCT) in Iran, with a focus on unrelated transplantations, compared with the rest of the world. He said: "A considerable number of Iranians are involved with life-threatening refractory diseases such as cancers, inherited immunodeficiency diseases, inherited severe hematologic diseases and hereditary metabolic diseases. In addition, the incidence of these diseases shows an increasing trend due to life style change and environmental pollution. Currently, the only proven lasting treatment for most of these diseases is HSCT. Nonetheless, in our country, as a result of some limitations, it is not possible to provide this therapy to many of the patients with such diseases. Successful countries in HSCT, e.g. USA and Germany, could provide a good backbone for provision of medical services to the patients in need of HCST, with investment and creation of centralized and integrated systems for registration of unrelated donors." Dr. Hamidieh went on to point out that only 3 out of 10 patients referred to the transplantation centers will find a suitable HLA matched donor among their relatives. He emphasized that the outcomes of related and unrelated transplantations are similar in the long run.
After that, Dr. Nikougoftar stressed the relentless efforts of her colleagues in the council secretariat and she described the process in which the regulatory standards of transplantation and donor registration were devised. She stated that the standards of CBBs and donor registries have been developed according to international standards. She added: "Unified and standard registration forms and checklists were also designed, which after approval, will be released to the centers with the logos of MOHME and INSCDN." She then expressed that few centers did not properly comply with the registration rules of the council. Finally, Dr. Nikougoftar reminded the issues ahead of the council secretariat, including provision of sufficient funds to continue the activities and she also outlined future plans.
Dr. Hamidieh went on to discuss the funding and annual budget of the secretariat, and highlighted the need for facilitation of financial donations to INSCDN, as well as problems over patients payments for international HLA matching search.
Conclusively, Dr. Pourfathollah mentioned: "With regards to the issue of lack of cooperation from some registries, strong action should be done." He added: "We are in the process of developing standards and these standards and regulations will soon be released. According to current directives, all registries and CBBs should comply with the rules and regulations of the Council within 6 months. Naturally, after standardization, regulatory issues need to be implemented and those centers that are not compliant with the relevant regulations by then, would have violated the rules, and the cases notified will be referred to appropriate authorities for disciplinary investigation." 
He also added: "Sufficient funds for the council secretariat should be provided in its own frame, so that it could be used appropriately by the secretariat. Therefore, a proper plan for this matter should be devised. In the context of financial donors, given our own experience in Iranian Blood Transfusion Organization, we can enjoy the benefits of [service packages]."