- Email: [email protected]
The Italian Association of Cord Blood Donors (ADISCO): 15 years of history and activities
Transfusion and Apheresis Science 42 (2010) 317–319
Contents lists available at ScienceDirect
Transfusion and Apheresis Science journal homepage: www.elsevier.com/locate/transci
The Italian Association of Cord Blood Donors (ADISCO): 15 years of history and activities Carolina Sciomer Associazione Donatrici Italiane, Sangue di Cordone Ombelicale (ADISCO), Policlinico Universitario Tor Vergata, Viale Oxford 81, 00133 Roma, Italy
1. Foundation of ADISCO The acronym ADISCO stands for Associazione Donatrici Italiane Sangue di Cordone Ombelicale (Italian Association of Cord Blood Donors). ADISCO was founded in 1995 by the initiative of a small group of prominent Italian hematologists and pediatricians including Professors Franco Mandelli, Pier Luigi Rossi Ferrini, Enrico Madon, Girolamo Sirchia (a former ministry of health). These clinicians in turn solicited a group of women who were already active in volunteer organizations promoting and supporting blood donation in different regions of the country, and encouraged them to create a non-profit association specifically devoted to promote amongst women the culture of cord blood donation for allogeneic use. 2. Aims and objectives of the association Since its foundation ADISCO pursues the following aims and objectives: To increase the awareness among citizens on the problems inherent cord blood donation and transplantation. To promote initiatives aimed at incrementing cord blood donation by creating and educating groups of volunteers active throughout the country. To collaborate with HLA typing centers in order to facilitate and speed HLA typing, support the activity of cord blood banks and their collaboration with clinical and research institutions by purchasing equipment and materials and by providing fellowships and other types of economic support for personnel involved in cord blood collection and banking. To foster research activities in the field of inherited and infectious diseases that may be revealed during routine screening of cord blood and banking procedures. E-mail address: [email protected] 1473-0502/$ - see front matter Ó 2010 Elsevier Ltd. All rights reserved. doi:10.1016/j.transci.2010.03.003
To foster and facilitate research in hematologic diseases that are subject to hematopoietic stem cell transplantation. To cooperate with authorities, universities, public hospitals and other pertinent institutions in the organization and implementation of services and equipment, as well as with institutions involved in public and social activities related to cord blood collection, banking and transplantation. To support the entire medical organization involved in the functioning of the cord blood national registry. 3. Structure and organization of ADISCO ADISCO is a non-profit association that exclusively operates in the spirit of social solidarity and altruism according to specific legal requisites established in the Italian national law no. 266/91 on volunteer activities [1]. The association statute explicitly evokes the absence of lucrative purposes, the democratic nature of the structure, the elective and non-remunerative nature of charges as well as the non-profit and gratuity of activities provided by members; the admission and exclusion criteria of members, as well their rights and obligations. All associate members have the same rights and obligations towards the association. The affiliation for membership is free and on a volunteer basis; however it obligates the associates to adhere to the statute and regulatory dispositions, as well as to directives and resolutions which are issued by the association board. The governance is composed by the general assembly (representing all affiliated members), the board of directors, the president, a general secretary and a treasurer (Fig. 1). The resolutions of the general assembly composed according to the statute are mandatory for all members. Associate members who have paid the annual membership fee have the right to participate in the assembly, with every member having the capacity to express one vote.
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C. Sciomer / Transfusion and Apheresis Science 42 (2010) 317–319
National President General > Secretary
National Treasurer
National Board of Directors
Fig. 3. Fund raising and income distribution in the year 2008.
Members
the social importance of cord blood donations. These include for example Telecom Italia (the most important telephone company of the country) and ENEL (an acronym for Ente Nazionale Energia Elettrica, i.e. the national electricity company) whose contribution and activity in public fund raising at the national level has been remarkable. Telecom Italia launched in 2005 a fund raising initiative named Panel Rosso in which customers were invited to fill an online questionnaire. A sum of 1 euro for every filled questionnaire was donated to the association. In 2009, the Foundation ENEL Cuore supported ADISCO by financing three selected projects presented in distinct geographical areas of the country (North, Center, and Southern Italy). The contribution (an amount of almost 100,000 euros was used to purchase equipment and technical resources for cord blood collection, transportation and banking, including motor vehicles specifically equipped for blood transport, computers and software programs for database storing. Many other sponsors have participated in local initiatives. Table 1 summarizes the fund raising activity and the revenues of ADISCO in the year 2008. The utilization of collected funds in the same year is shown in Table 2 and Fig. 4.
(Members, Regional Sections, Territorial Sections)
Fig. 1. Structure and organization of ADISCO.
The board of directors consists of a maximum of 11 members (including the president) and has a 3 year term mandate. The board elects the president, a treasurer and a secretary among its members. The members of the board may be re-elected. As shown in Fig. 2, there are 12 regional sections of the association distributed throughout the national territory. Regional sections may include territorial sections.
4. Achievements of the association in the past 15 years The main activity of the association has focussed on promoting the culture of cord blood donation for allogeneic use by sensitizing the public opinion on the social importance of this solidarity act. Over the past 15 years, ADISCO has progressively spread its activities and is currently present in 65% of the national territory. As shown in Fig. 3, ADISCO is supported by the revenues of the membership fee, contributions by local and national entities and industries as well as by public and private donations. Fund raising activities and events are organised by the volunteers on a regular basis both at the national and regional or local level. In the past few years, an increasing number of important Italian industries contributed significantly with donations and/or fund raising initiatives to sensitize citizens on
5. The Institutional role of ADISCO ADISCO interacts with governmental entities both at the local and national levels to formulate educational programs and to promote legal initiatives aimed at protecting women who donate cord blood and their newborns. The national president participates in board meetings of governmental entities entitled for the organization and plan-
The association consists of: •
11
regional
sections:
(Piemonte,
Lombardia, Friuli Venezia Giulia, Emilia Romagna, Marche, Toscana, Lazio, Abruzzo, Campania, Calabria, Puglia);
•
9 territorial sections (Alessandria, Alto Adige, Bologna, Versilia, Grosseto, Apuania,
Lamezia Terme, Foggia, Bisceglie). Fig. 2. Regional sections of ADISCO in the country.
C. Sciomer / Transfusion and Apheresis Science 42 (2010) 317–319 Table 1 Fund raising activity of ADISCO and revenues in 2008 (euros). Annual membership fee Regional fund raising activities (theatre, concerts, etc.) Private donations Institutional donations Total fund raising income
20.000 520.000 110.000 70.000 720.000
Table 2 Fund assignment in the year 2008. Equipment for cord blood collection, transport and banking Research grants to young investigators Functioning costs (office rentals, secretary, mail, other) Events organization and advertising Other (personnel, counselling) Total
97.000 107.000 370.000 102.000 26.000 702.000
Equipment for cord blood collection, transport and banking Research grants to young investigators Functioning costs (office rentals, secretary, mail, other) Events organization and advertising Other (personnel, counselling)
Fig. 4. Expenses and fund destination in the year 2008.
ning of blood transfusion. The president of ADISCO also seats as a member of the national ministry of health committee on hemopoietic stem cells, has partnership interaction with institutes of the National Blood Center and the National Transplant Center.
6. The position of ADISCO in the current debate on cord blood banks for allogeneic versus autologous use Since its constitution and along the past 15 years, ADISCO has always supported the use of hematopoietic stem cell for allogeneic use and has adhered to the opinion shared by the international scientific community that discourages the cryopreservation and use of cord blood hematopoietic cells for autologous use [2]. ADISCO has continuously taken advantage from its collaboration with its scientific referents who are regarded as prominent expert at the international level (e.g. Professors Girolamo Sirchia and Franco Mandelli), for the planning and conduct of its activities at national and regional level. The aim of such interaction with scientific experts is that of maintaining its message strictly coherent with the status of scientific knowledge, providing an updated information on the advances of cord blood use for transplantation resulting from the international scientific consensus, and promoting vol-
319
unteer donation in line with the altruistic spirit of the European Community guidelines. The current Italian law (Health Ministry Decrees of December 31st, 2009) [3] confirms previous decrees establishing that cord blood cryopreservation represents a primary interest for the National Health System and it is therefore permitted in public dedicated hospitals. Moreover, the same decrees dictate that: (i) cord blood cryopreservation is only allowed for successive allogeneic use with solidaristic intent, in keeping with article 3, paragraph 3 of the national blood transfusion law no. 219/ 2005 [4]; (ii) the donation is authorised for dedicated use for family members at high risk of developing diseases that are known to be curable by hematopoietic stem cell transplantation; (iii) the cryopreservation of cord blood does not imply any expense for the requesting individuals; and (iv) any procedure of cord blood storage for autologous use must be disciplined based on appropriate indications supported by solid scientific evidence. Moreover, the law emphasizes clearly that the constitution of private banks and any related advertising is strictly forbidden. Based on the above statements and besides its activity in promoting the culture of cord blood donation, the association interacts with the Italian political institutions. 7. Future perspectives The network of the Italian cord blood banks is currently working under the coordination of the National Blood Center and in collaboration with the National Transplant Center, to standardise and implement operational protocols and to explore and develop new areas of investigation in the context of cord blood banking. This network should soon obtain its official institutional recognition by the political authorities and will be acting under the coordination of the National Blood Center. The need of expanding the Italian Cord Blood Banks Network increases in parallel with transplant centers’ request of compatible units whose search should permit the access to a broad inventory and without needing to start several times the search. In addition, the homogenization of the Network in terms of procedures and standards should guarantee for quality of the unit irrespective of the geographical location of bank in the national territory. These needs clearly highlight the importance of an increased promotion activity in support of cord blood donation for altruistic donation, to contrast and discourage autologous cryopreservation and to achieve the objective of storing at least 100,000 cord blood units in the next 5 years. With these aims in mind, ADISCO will continue its activity and hopefully will increase its impact on the Italian population to correctly inform and promote the culture of altruistic donation of human cord blood. References [1] Law 1991/266. Gazzetta Ufficiale, no. 196; 22 August 1991. [2] Edozien LC. NHS maternity units should not encourage commercial banking of umbilical cord blood. Br Med J 2006;333:801–4. [3] Decrees 18 November 2009. Gazzetta Ufficiale, no. 303; 31 December 2009. p. 19, 24. [4] Law 2005/219. Gazzetta Ufficiale, no. 251; 27 October 2005.
Contents lists available at ScienceDirect
Transfusion and Apheresis Science journal homepage: www.elsevier.com/locate/transci
The Italian Association of Cord Blood Donors (ADISCO): 15 years of history and activities Carolina Sciomer Associazione Donatrici Italiane, Sangue di Cordone Ombelicale (ADISCO), Policlinico Universitario Tor Vergata, Viale Oxford 81, 00133 Roma, Italy
1. Foundation of ADISCO The acronym ADISCO stands for Associazione Donatrici Italiane Sangue di Cordone Ombelicale (Italian Association of Cord Blood Donors). ADISCO was founded in 1995 by the initiative of a small group of prominent Italian hematologists and pediatricians including Professors Franco Mandelli, Pier Luigi Rossi Ferrini, Enrico Madon, Girolamo Sirchia (a former ministry of health). These clinicians in turn solicited a group of women who were already active in volunteer organizations promoting and supporting blood donation in different regions of the country, and encouraged them to create a non-profit association specifically devoted to promote amongst women the culture of cord blood donation for allogeneic use. 2. Aims and objectives of the association Since its foundation ADISCO pursues the following aims and objectives: To increase the awareness among citizens on the problems inherent cord blood donation and transplantation. To promote initiatives aimed at incrementing cord blood donation by creating and educating groups of volunteers active throughout the country. To collaborate with HLA typing centers in order to facilitate and speed HLA typing, support the activity of cord blood banks and their collaboration with clinical and research institutions by purchasing equipment and materials and by providing fellowships and other types of economic support for personnel involved in cord blood collection and banking. To foster research activities in the field of inherited and infectious diseases that may be revealed during routine screening of cord blood and banking procedures. E-mail address: [email protected] 1473-0502/$ - see front matter Ó 2010 Elsevier Ltd. All rights reserved. doi:10.1016/j.transci.2010.03.003
To foster and facilitate research in hematologic diseases that are subject to hematopoietic stem cell transplantation. To cooperate with authorities, universities, public hospitals and other pertinent institutions in the organization and implementation of services and equipment, as well as with institutions involved in public and social activities related to cord blood collection, banking and transplantation. To support the entire medical organization involved in the functioning of the cord blood national registry. 3. Structure and organization of ADISCO ADISCO is a non-profit association that exclusively operates in the spirit of social solidarity and altruism according to specific legal requisites established in the Italian national law no. 266/91 on volunteer activities [1]. The association statute explicitly evokes the absence of lucrative purposes, the democratic nature of the structure, the elective and non-remunerative nature of charges as well as the non-profit and gratuity of activities provided by members; the admission and exclusion criteria of members, as well their rights and obligations. All associate members have the same rights and obligations towards the association. The affiliation for membership is free and on a volunteer basis; however it obligates the associates to adhere to the statute and regulatory dispositions, as well as to directives and resolutions which are issued by the association board. The governance is composed by the general assembly (representing all affiliated members), the board of directors, the president, a general secretary and a treasurer (Fig. 1). The resolutions of the general assembly composed according to the statute are mandatory for all members. Associate members who have paid the annual membership fee have the right to participate in the assembly, with every member having the capacity to express one vote.
318
C. Sciomer / Transfusion and Apheresis Science 42 (2010) 317–319
National President General > Secretary
National Treasurer
National Board of Directors
Fig. 3. Fund raising and income distribution in the year 2008.
Members
the social importance of cord blood donations. These include for example Telecom Italia (the most important telephone company of the country) and ENEL (an acronym for Ente Nazionale Energia Elettrica, i.e. the national electricity company) whose contribution and activity in public fund raising at the national level has been remarkable. Telecom Italia launched in 2005 a fund raising initiative named Panel Rosso in which customers were invited to fill an online questionnaire. A sum of 1 euro for every filled questionnaire was donated to the association. In 2009, the Foundation ENEL Cuore supported ADISCO by financing three selected projects presented in distinct geographical areas of the country (North, Center, and Southern Italy). The contribution (an amount of almost 100,000 euros was used to purchase equipment and technical resources for cord blood collection, transportation and banking, including motor vehicles specifically equipped for blood transport, computers and software programs for database storing. Many other sponsors have participated in local initiatives. Table 1 summarizes the fund raising activity and the revenues of ADISCO in the year 2008. The utilization of collected funds in the same year is shown in Table 2 and Fig. 4.
(Members, Regional Sections, Territorial Sections)
Fig. 1. Structure and organization of ADISCO.
The board of directors consists of a maximum of 11 members (including the president) and has a 3 year term mandate. The board elects the president, a treasurer and a secretary among its members. The members of the board may be re-elected. As shown in Fig. 2, there are 12 regional sections of the association distributed throughout the national territory. Regional sections may include territorial sections.
4. Achievements of the association in the past 15 years The main activity of the association has focussed on promoting the culture of cord blood donation for allogeneic use by sensitizing the public opinion on the social importance of this solidarity act. Over the past 15 years, ADISCO has progressively spread its activities and is currently present in 65% of the national territory. As shown in Fig. 3, ADISCO is supported by the revenues of the membership fee, contributions by local and national entities and industries as well as by public and private donations. Fund raising activities and events are organised by the volunteers on a regular basis both at the national and regional or local level. In the past few years, an increasing number of important Italian industries contributed significantly with donations and/or fund raising initiatives to sensitize citizens on
5. The Institutional role of ADISCO ADISCO interacts with governmental entities both at the local and national levels to formulate educational programs and to promote legal initiatives aimed at protecting women who donate cord blood and their newborns. The national president participates in board meetings of governmental entities entitled for the organization and plan-
The association consists of: •
11
regional
sections:
(Piemonte,
Lombardia, Friuli Venezia Giulia, Emilia Romagna, Marche, Toscana, Lazio, Abruzzo, Campania, Calabria, Puglia);
•
9 territorial sections (Alessandria, Alto Adige, Bologna, Versilia, Grosseto, Apuania,
Lamezia Terme, Foggia, Bisceglie). Fig. 2. Regional sections of ADISCO in the country.
C. Sciomer / Transfusion and Apheresis Science 42 (2010) 317–319 Table 1 Fund raising activity of ADISCO and revenues in 2008 (euros). Annual membership fee Regional fund raising activities (theatre, concerts, etc.) Private donations Institutional donations Total fund raising income
20.000 520.000 110.000 70.000 720.000
Table 2 Fund assignment in the year 2008. Equipment for cord blood collection, transport and banking Research grants to young investigators Functioning costs (office rentals, secretary, mail, other) Events organization and advertising Other (personnel, counselling) Total
97.000 107.000 370.000 102.000 26.000 702.000
Equipment for cord blood collection, transport and banking Research grants to young investigators Functioning costs (office rentals, secretary, mail, other) Events organization and advertising Other (personnel, counselling)
Fig. 4. Expenses and fund destination in the year 2008.
ning of blood transfusion. The president of ADISCO also seats as a member of the national ministry of health committee on hemopoietic stem cells, has partnership interaction with institutes of the National Blood Center and the National Transplant Center.
6. The position of ADISCO in the current debate on cord blood banks for allogeneic versus autologous use Since its constitution and along the past 15 years, ADISCO has always supported the use of hematopoietic stem cell for allogeneic use and has adhered to the opinion shared by the international scientific community that discourages the cryopreservation and use of cord blood hematopoietic cells for autologous use [2]. ADISCO has continuously taken advantage from its collaboration with its scientific referents who are regarded as prominent expert at the international level (e.g. Professors Girolamo Sirchia and Franco Mandelli), for the planning and conduct of its activities at national and regional level. The aim of such interaction with scientific experts is that of maintaining its message strictly coherent with the status of scientific knowledge, providing an updated information on the advances of cord blood use for transplantation resulting from the international scientific consensus, and promoting vol-
319
unteer donation in line with the altruistic spirit of the European Community guidelines. The current Italian law (Health Ministry Decrees of December 31st, 2009) [3] confirms previous decrees establishing that cord blood cryopreservation represents a primary interest for the National Health System and it is therefore permitted in public dedicated hospitals. Moreover, the same decrees dictate that: (i) cord blood cryopreservation is only allowed for successive allogeneic use with solidaristic intent, in keeping with article 3, paragraph 3 of the national blood transfusion law no. 219/ 2005 [4]; (ii) the donation is authorised for dedicated use for family members at high risk of developing diseases that are known to be curable by hematopoietic stem cell transplantation; (iii) the cryopreservation of cord blood does not imply any expense for the requesting individuals; and (iv) any procedure of cord blood storage for autologous use must be disciplined based on appropriate indications supported by solid scientific evidence. Moreover, the law emphasizes clearly that the constitution of private banks and any related advertising is strictly forbidden. Based on the above statements and besides its activity in promoting the culture of cord blood donation, the association interacts with the Italian political institutions. 7. Future perspectives The network of the Italian cord blood banks is currently working under the coordination of the National Blood Center and in collaboration with the National Transplant Center, to standardise and implement operational protocols and to explore and develop new areas of investigation in the context of cord blood banking. This network should soon obtain its official institutional recognition by the political authorities and will be acting under the coordination of the National Blood Center. The need of expanding the Italian Cord Blood Banks Network increases in parallel with transplant centers’ request of compatible units whose search should permit the access to a broad inventory and without needing to start several times the search. In addition, the homogenization of the Network in terms of procedures and standards should guarantee for quality of the unit irrespective of the geographical location of bank in the national territory. These needs clearly highlight the importance of an increased promotion activity in support of cord blood donation for altruistic donation, to contrast and discourage autologous cryopreservation and to achieve the objective of storing at least 100,000 cord blood units in the next 5 years. With these aims in mind, ADISCO will continue its activity and hopefully will increase its impact on the Italian population to correctly inform and promote the culture of altruistic donation of human cord blood. References [1] Law 1991/266. Gazzetta Ufficiale, no. 196; 22 August 1991. [2] Edozien LC. NHS maternity units should not encourage commercial banking of umbilical cord blood. Br Med J 2006;333:801–4. [3] Decrees 18 November 2009. Gazzetta Ufficiale, no. 303; 31 December 2009. p. 19, 24. [4] Law 2005/219. Gazzetta Ufficiale, no. 251; 27 October 2005.