المؤلفون: Mehta, A, Kuter, DJ, Salek, SS, Belmatoug, N, Bembi, B, Bright, J, vom Dahl, S, Deodato, F, Di Rocco, M, Goker-Alpan, O, Hughes, DA, Lukina, EA, Machaczka, M, Mengel, E, Nagral, A, Nakamura, K, Narita, A, Oliveri, B, Pastores, G, Perez-Lopez, J, Ramaswami, U, Schwartz, IV, Szer, J, Weinreb, NJ, Zimran, A

المصدر: Internal medicine journal. 49(5):578-591

مصطلحات موضوعية: Medicin och hälsovetenskap

URL الوصول: http://kipublications.ki.se/Default.aspx?queryparsed=id:140938544

المؤلفون: Biegstraaten, M, Cox, TM, Belmatoug, N, Berger, MG, Collin-Histed, T, Dahl, SV, Di Rocco, M, Fraga, C, Giona, F, Giraldo, P, Hasanhodzic, M, Hughes, DA, Iversen, PO, Kiewiet, AI, Lukina, E, Machaczka, M, Marinakis, T, Mengel, E, Pastores, GM, Plockinger, U, Rosenbaum, H, Serratrice, C, Symeonidis, A, Szer, J, Timmerman, J, Tylki-Szymanska, A, Hubshman, MW, Zafeiriou, DI, Zimran, A, Hollak, CEM

المصدر: Blood cells, molecules & diseases. 68:203-208

مصطلحات موضوعية: Medicin och hälsovetenskap

URL الوصول: http://kipublications.ki.se/Default.aspx?queryparsed=id:137154815

المؤلفون: Perez, Y., Belmatoug, N., Bengherbia, M., Yousfi, K., Lioger, B.

المصدر: La Revue de Médecine Interne ; volume 44, issue 2, page 55-61 ; ISSN 0248-8663

الاتاحة: http://dx.doi.org/10.1016/j.revmed.2022.11.012
https://api.elsevier.com/content/article/PII:S0248866322011547?httpAccept=text/xml
https://api.elsevier.com/content/article/PII:S0248866322011547?httpAccept=text/plain

المؤلفون: Heard, JM, Vrinten, C, Schlander, M, Bellettato, CM, van Lingen, C, Scarpa, M, Matthijs, G, Nassogne, MC, Debray, FG, Roland, D, Chamova, T, Kozich, V, Pavel, J, Zenker, M, Lampe, C, Das, AM, Hennermann, J, Kolker, S, Weinhold, N, Mohnike, K, Gruenert, S, Lund, AM, Morales-Conejo, M, del Toro-Riera, M, Aldamiz-Echevarria, L, Garcia-Silva, MT, Schiff, M, Gouya, L, Labrune, P, de Lonlay, P, Belmatoug, N, Germain, DP, Cano, A, Dobbelaere, D, Jones, S, Dawson, C, Deegan, P, Santra, S, Vijay, S, Ramadza, DP, Baric, I, Zigman, T, Pflieger, G, Szakszon, K, Kaposta, R, Gasperini, S, Burlina, A, Parenti, G, Strisciuglio, P, Ceccarini, G, Federico, A, Simonati, A, Tumiene, B, Huidekoper, H, van Spronsen, F, Bosch, A, Rubio-Gozalbo, ME, Visser, G, Tangeraas, T, Aarsand, A, Kiec-Wilk, B, Gaspar, AMSM, Quelhas, D, Leao-Teles, E, Azevedo, O, Silva, EMFR, Matos, LMDFD, Martins, E, Lajic, S, Darin, N, Groselj, U, Tansek, MZ

المصدر: Orphanet journal of rare diseases. 15(1):3

مصطلحات موضوعية: Medicin och hälsovetenskap

URL الوصول: http://kipublications.ki.se/Default.aspx?queryparsed=id:143042857

المؤلفون: Parenti G., Fecarotta S., Alagia M., Attaianese F., Verde A., Tarallo A., Gragnaniello V., Ziagaki A., Guimaraes M. J., Aguiar P., Hahn A., Azevedo O., Donati M. A., Kiec-Wilk B., Scarpa M., van der Beek N. A. M. E., Del Toro Riera M., Germain D. P., Huidekoper H., van den Hout J. M. P., van der Ploeg A. T., Zeman J., Witters P., Weinhold N., Vijay S., van Hasselt P. M., Ullrich K., Tournev I., Salviati A., Rutsch F., Roland D., Rokicki D., Rodrigues E., Pfliegler G., Miclea D., Martins E., Martin-Hernandez E., Komninaka V., Kingma S., Jones S., Hiwot T. G., Hennermann J., Guffon-Fouilhoux N., Grosso S., Lopez A. G. -M., Gasperini S., Gaspar A. M., Ferreira A., Eyskens F., Dobbelaere D., Di Rocco M., De Las Heras Montero J., de Abreu Freire Diogo Matos L. M., Deegan P., Debray F. G., Das A. M., Darin N., Couce-Pico M. L., Chronopoulou E., Chabrol B., Cassiman D., Burlina A., Brassier A., Bosch A. M., Bordugo A., Belmatoug N., Batzios S., Baric I.

المساهمون: Parenti, G., Fecarotta, S., Alagia, M., Attaianese, F., Verde, A., Tarallo, A., Gragnaniello, V., Ziagaki, A., Guimaraes, M. J., Aguiar, P., Hahn, A., Azevedo, O., Donati, M. A., Kiec-Wilk, B., Scarpa, M., van der Beek, N. A. M. E., Del Toro Riera, M., Germain, D. P., Huidekoper, H., van den Hout, J. M. P., van der Ploeg, A. T., Zeman, J., Witters, P., Weinhold, N., Vijay, S., van Hasselt, P. M., Ullrich, K., Tournev, I., Salviati, A., Rutsch, F., Roland, D., Rokicki, D., Rodrigues, E., Pfliegler, G., Miclea, D., Martins, E., Martin-Hernandez, E., Komninaka, V., Kingma, S., Jones, S., Hiwot, T. G., Hennermann, J., Guffon-Fouilhoux, N., Grosso, S., Lopez, A. G. -M., Gasperini, S., Gaspar, A. M., Ferreira, A., Eyskens, F., Dobbelaere, D., Di Rocco, M., De Las Heras Montero, J., de Abreu Freire Diogo Matos, L. M., Deegan, P., Debray, F. G., Das, A. M., Darin, N., Couce-Pico, M. L., Chronopoulou, E., Chabrol, B., Cassiman, D., Burlina, A., Brassier, A., Bosch, A. M., Bordugo, A., Belmatoug, N., Batzios, S., Baric, I.

مصطلحات موضوعية: Acid alpha-glucosidase deficiency, Acid maltase deficiency, Glycogen storage disease (GSD) type II, Lysosomal storage disease, Pompe disease

Relation: info:eu-repo/semantics/altIdentifier/wos/WOS:001346304100001; volume:19; issue:1; journal:ORPHANET JOURNAL OF RARE DISEASES; https://hdl.handle.net/11588/989628

الاتاحة: https://hdl.handle.net/11588/989628
https://doi.org/10.1186/s13023-024-03373-w

المؤلفون: Elstein, D, Belmatoug, N, Deegan, P, Göker-Alpan, Ö, Hughes, DA, Schwartz, IVD, Weinreb, N, Bonner, N, Panter, C, Fountain, D, Lenny, A, Longworth, L, Miller, R, Shah, K, Schenk, J, Sen, R, Zimran, A

المصدر: Orphanet Journal of Rare Diseases , 17 , Article 9. (2022)

مصطلحات موضوعية: Content validation, Gaucher disease, Lysosomal storage disorder, PROM, Patient-reported outcomes, Psychometric validation, Questionnaire, Adult, Humans, Patient Reported Outcome Measures, Psychometrics, Quality of Life, Reproducibility of Results, Surveys and Questionnaires

وصف الملف: application/pdf

Relation: https://discovery.ucl.ac.uk/id/eprint/10149906/1/s13023-021-02163-y.pdf; https://discovery.ucl.ac.uk/id/eprint/10149906/

الاتاحة: https://discovery.ucl.ac.uk/id/eprint/10149906/1/s13023-021-02163-y.pdf
https://discovery.ucl.ac.uk/id/eprint/10149906/

المؤلفون: Camou, F., Helle, C., Lagadec, A., Coutinho, A., Berger, M.G, Cador-Rousseau, Berengere, Gaches, F., Belmatoug, N.

المساهمون: Hôpital Saint-André, Sanofi Genzyme, Role of intra-Clonal Heterogeneity and Leukemic environment in ThErapy Resistance of chronic leukemias (CHELTER), Université Clermont Auvergne (UCA), Centre Hospitalier Universitaire de Rennes CHU Rennes = Rennes University Hospital Pontchaillou, Hôpital Beaujon AP-HP, Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP)

المصدر: 83e Congrès de la Société Nationale Francaise de Médecine Interne
https://uca.hal.science/hal-03462838
83e Congrès de la Société Nationale Francaise de Médecine Interne, 2021, Paris, France

مصطلحات موضوعية: Qualité de vie, Traitement, Maladie de Gaucher, [SDV.MHEP.HEM]Life Sciences [q-bio]/Human health and pathology/Hematology

جغرافية الموضوع: Paris, France

Relation: hal-03462838; https://uca.hal.science/hal-03462838; https://uca.hal.science/hal-03462838/document; https://uca.hal.science/hal-03462838/file/Soumision_abstract%20ELIPRO_SNFMI%202021.pdf

الاتاحة: https://uca.hal.science/hal-03462838
https://uca.hal.science/hal-03462838/document
https://uca.hal.science/hal-03462838/file/Soumision_abstract%20ELIPRO_SNFMI%202021.pdf

المؤلفون: Heard, JM, Bellettato, C, Lingen, C, Scarpa, M, Debray, FG, Nassogne, MC, van Coster, R, De Meirleir, L, Eyskens, F, Morava, E, Baric, I, Kozich, V, Lund, AM, Germain, D, Belmatoug, N, Guffon, N, Labrune, P, Gouya, L, De Lonlay, P, Schiff, M, Dobbelaere, D, Chabrol, B, Ploeckinger, U, Das, AM, Spiekerkoetter, U, Rutsch, F, Mohnike, K, Hahn, A, Kolker, S, Ullrich, K, Hennermann, J, Balogh, I, Bembi, B, Donati, MA, Gasperini, S, Parenti, G, Salviati, A, Vici, CD, Di Rocco, M, Cefalo, G, Burlina, A, Ceccarini, G, Federico, A, Van der Ploeg, A, Rubio-Gozalbo, ME, Van Spronsen, F, Visser, G, Bosch, A, Tangeraas, T, Sanderberg, S, Kiec-Wilk, B, Gaspar, AMSM, Martins, E, Silva, EMFR, Matos, LMDFD, Azevedo, O, Tansek, MZ, Couce-Pico, ML, Cazorla, AG, Azuara, LAE, Del Toro-Riera, M, Silva, MTG, Lajic, S, Darin, N, Deegan, P, Vijay, S, Chronopolou, E, Jones, S, Chakrapani, A, Hiwot, T

المصدر: Orphanet journal of rare diseases. 14(1):119

مصطلحات موضوعية: Medicin och hälsovetenskap

URL الوصول: http://kipublications.ki.se/Default.aspx?queryparsed=id:141032168

المؤلفون: Mehta, A, Kuter, DJ, Salek, SS, Belmatoug, N, Bembi, B, Bright, J, Dahl, SV, Deodato, F, Di Rocco, M, Goker-Alpan, O, Hughes, DA, Lukina, EA, Machaczka, M, Mengel, E, Nagral, A, Nakamura, K, Narita, A, Oliveri, B, Pastores, G, Perez-Lopez, J, Ramaswami, U, Schwartz, IV, Szer, J, Weinreb, NJ, Zimran, A

المصدر: Internal medicine journal. 49(8):1059-1059

مصطلحات موضوعية: Medicin och hälsovetenskap

URL الوصول: http://kipublications.ki.se/Default.aspx?queryparsed=id:141593654

المؤلفون: Lukina, E, Balwani, M, Belmatoug, N, Watman, N, Hughes, D, Gaemers, SJM, Foster, MC, Lewis, G, Peterschmitt, MJ

المصدر: JIMD Reports , 57 (1) pp. 76-84. (2021)

مصطلحات موضوعية: Gaucher disease, clinical trials, eliglustat, lysosomal storage disorder, pregnancy

وصف الملف: text

Relation: https://discovery.ucl.ac.uk/id/eprint/10121870/1/jmd2.12172.pdf; https://discovery.ucl.ac.uk/id/eprint/10121870/

الاتاحة: https://discovery.ucl.ac.uk/id/eprint/10121870/1/jmd2.12172.pdf
https://discovery.ucl.ac.uk/id/eprint/10121870/

المؤلفون: Hughes D., Mikosch P., Belmatoug N., Carubbi F., Cox T., Goker-Alpan O., Kindmark A., Mistry P., Poll L., Weinreb N., Deegan P.

المساهمون: Hughes, D., Mikosch, P., Belmatoug, N., Carubbi, F., Cox, T., Goker-Alpan, O., Kindmark, A., Mistry, P., Poll, L., Weinreb, N., Deegan, P.

مصطلحات موضوعية: BIOMARKERS, BONE DISEASE, GAUCHER DISEASE, OSTEONECROSIS, OSTEOPOROSIS, RADIOLOGY, THERAPEUTICS, Bone Marrow, Bone Remodeling, Bone and Bone, Human, Practice Patterns, Physicians'

Relation: info:eu-repo/semantics/altIdentifier/pmid/31233632; info:eu-repo/semantics/altIdentifier/wos/WOS:000477928600003; volume:34; issue:6; firstpage:996; lastpage:1013; numberofpages:18; journal:JOURNAL OF BONE AND MINERAL RESEARCH; http://hdl.handle.net/11380/1222984; info:eu-repo/semantics/altIdentifier/scopus/2-s2.0-85069915570

الاتاحة: http://hdl.handle.net/11380/1222984
https://doi.org/10.1002/jbmr.3734

المؤلفون: Hughes, D, Mikosch, P, Belmatoug, N, Carubbi, F, Cox, T, Goker-Alpan, O, Kindmark, A, Mistry, P, Poll, L, Weinreb, N, Deegan, P

المصدر: Journal of Bone and Mineral Research , 34 (6) pp. 996-1013. (2019)

مصطلحات موضوعية: biomarkers, bone disease, Gaucher disease, osteonecrosis, osteoporosis, radiology, therapeutics

وصف الملف: text

Relation: https://discovery.ucl.ac.uk/id/eprint/10077299/1/Hughes_et_al-2019-Journal_of_Bone_and_Mineral_Research.pdf; https://discovery.ucl.ac.uk/id/eprint/10077299/

الاتاحة: https://discovery.ucl.ac.uk/id/eprint/10077299/1/Hughes_et_al-2019-Journal_of_Bone_and_Mineral_Research.pdf
https://discovery.ucl.ac.uk/id/eprint/10077299/

المؤلفون: Nguyen, Y., Stirnemann, J., Belmatoug, N.

المصدر: La Revue de Médecine Interne ; volume 40, issue 5, page 313-322 ; ISSN 0248-8663

الاتاحة: http://dx.doi.org/10.1016/j.revmed.2018.11.012
https://api.elsevier.com/content/article/PII:S0248866318311858?httpAccept=text/xml
https://api.elsevier.com/content/article/PII:S0248866318311858?httpAccept=text/plain

المؤلفون: Nguyen, Y., Stirnemann, J., Billette, T., Yousfi, K., Zebiche, S., Hamroun, D., Brassier, A., Swiader, L., Dalbies, F., Cador, B., Guemann, A.S., Gaches, F., Leguy-Seguin, V., Masseau, A., Pers, Y.M., Pichard, S., Szymanowski, M., Astudillo, L., Nadjar, Y., Serratrice, C., Berger, M., Camou, F., Belmatoug, N.

المصدر: La Revue de Médecine Interne ; volume 44, page A334 ; ISSN 0248-8663

الاتاحة: http://dx.doi.org/10.1016/j.revmed.2023.10.021
https://api.elsevier.com/content/article/PII:S024886632300783X?httpAccept=text/xml
https://api.elsevier.com/content/article/PII:S024886632300783X?httpAccept=text/plain

المؤلفون: Belmatoug, N, Di Rocco, M, Fraga, C, Giraldo, P, Hughes, D, Lukina, E, Maison-Blanche, P, Merkel, M, Niederau, C, Plockinger, U, Richter, J, Stulnig, TM, Dahl, SV, Cox, TM

المصدر: European Journal of Internal Medicine , 37 pp. 25-32. (2017)

مصطلحات موضوعية: Type 1 Gaucher disease, Eliglustat, Substrate reduction therapy, Enzyme replacement/augmentation therapy, Drug metabolism, Drug interactions

وصف الملف: text

Relation: https://discovery.ucl.ac.uk/id/eprint/10056767/1/1-s2.0-S0953620516302175-main.pdf; https://discovery.ucl.ac.uk/id/eprint/10056767/

الاتاحة: https://discovery.ucl.ac.uk/id/eprint/10056767/1/1-s2.0-S0953620516302175-main.pdf
https://discovery.ucl.ac.uk/id/eprint/10056767/

المؤلفون: Mehta, A, Belmatoug, N, Bembi, B, Deegan, P, Elstein, D, Göker-Alpan, Ö, Lukina, E, Mengel, E, Nakamura, K, Pastores, GM, López, JP, Schwartz, I, Serratrice, C, Szer, J, Zimran, A, Di Rocco, M, Panahloo, Z, Kuter, DJ, Hughes, D

المصدر: Molecular Genetics and Metabolism , 122 (3) pp. 122-129. (2017)

مصطلحات موضوعية: Delayed diagnosis, Diagnosis, Gaucher disease, Patient survey, Physician survey

وصف الملف: text

Relation: https://discovery.ucl.ac.uk/id/eprint/1573118/1/Hughes_1-s2.0-S1096719217303761-main.pdf; https://discovery.ucl.ac.uk/id/eprint/1573118/

الاتاحة: https://discovery.ucl.ac.uk/id/eprint/1573118/1/Hughes_1-s2.0-S1096719217303761-main.pdf
https://discovery.ucl.ac.uk/id/eprint/1573118/

المؤلفون: Mauhin, W., Belmatoug, N., Berger, M., Besset, Q., Boitiaux, J.F., Brassier, A., Douillard, C., Gousseff, M., Lavigne, C., Martis, N., Mellot, C., Nguyen, A., Subran, B., Klein, E., Strauss, C., Guillot, E., Lidove, O.

المصدر: La Revue de Médecine Interne ; volume 43, page A75-A76 ; ISSN 0248-8663

الاتاحة: http://dx.doi.org/10.1016/j.revmed.2022.03.253
https://api.elsevier.com/content/article/PII:S024886632200337X?httpAccept=text/xml
https://api.elsevier.com/content/article/PII:S024886632200337X?httpAccept=text/plain

المؤلفون: Stepien K. M., Kiec-Wilk B., Lampe C., Tangeraas T., Cefalo G., Belmatoug N., Francisco R., del Toro M., Wagner L., Lauridsen A. -G., Sestini S., Weinhold N., Hahn A., Montanari C., Rovelli V., Bellettato C. M., Paneghetti L., van Lingen C., Scarpa M.

المساهمون: Stepien, K. M., Kiec-Wilk, B., Lampe, C., Tangeraas, T., Cefalo, G., Belmatoug, N., Francisco, R., del Toro, M., Wagner, L., Lauridsen, A. -G., Sestini, S., Weinhold, N., Hahn, A., Montanari, C., Rovelli, V., Bellettato, C. M., Paneghetti, L., van Lingen, C., Scarpa, M.

مصطلحات موضوعية: adult metabolic patient, adulthood (18 years and older), challenge, continuity of care, inherited metabolic disease(s), rare disease, transition process

Relation: info:eu-repo/semantics/altIdentifier/wos/WOS:000629292700001; volume:8; journal:FRONTIERS IN MEDICINE; https://hdl.handle.net/11577/3486179; info:eu-repo/semantics/altIdentifier/scopus/2-s2.0-85102786125

الاتاحة: https://hdl.handle.net/11577/3486179
https://doi.org/10.3389/fmed.2021.652358

المؤلفون: Héron, B., Billette de Villemeur, T., Dufaure Garé, I., Brassier, A., Chabrol, B., Pichard, S., Feillet, F., Guemann, A.S., Barth, M., Tardieu, M., Nadjar, Y., Belmatoug, N., Sacaze, E., Roubertie, A., Cador, B., Beze-Beyrie, P., Klising, E., Guéguen, S., Amselem, S.

المساهمون: CHU Trousseau APHP, Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP)-Sorbonne Université (SU), Rare Disease Cohorts (RaDiCo), Maladies génétiques d'expression pédiatrique (U933), Institut National de la Santé et de la Recherche Médicale (INSERM)-CHU Trousseau APHP, Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP)-Sorbonne Université (SU)-Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP)-Sorbonne Université (SU)-Institut National de la Santé et de la Recherche Médicale (INSERM)-CHU Trousseau APHP, Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP)-Sorbonne Université (SU)-Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP)-Sorbonne Université (SU), Hôpital Necker - Enfants Malades AP-HP, Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP), Hôpital de la Timone CHU - APHM (TIMONE), AP-HP Hôpital universitaire Robert-Debré Paris, Centre Hospitalier Régional Universitaire de Nancy (CHRU Nancy), Hôpital Jeanne de Flandre Lille, Centre Hospitalier Universitaire d'Angers (CHU Angers), PRES Université Nantes Angers Le Mans (UNAM), CHU Trousseau Tours, Centre Hospitalier Régional Universitaire de Tours (CHRU Tours), CHU Pitié-Salpêtrière AP-HP, Hôpital Beaujon AP-HP, Centre Hospitalier Régional Universitaire de Brest (CHRU Brest), Hôpital Gui de Chauliac CHU Montpellier, Centre Hospitalier Régional Universitaire Montpellier (CHRU Montpellier), Centre Hospitalier Universitaire de Rennes CHU Rennes = Rennes University Hospital Pontchaillou, Centre hospitalier de Pau, ANR-10-COHO-0003,RADICO,Cohorte nationale maladies rares(2010)

المصدر: Association Française des CRO (AFCRO) ; https://inserm.hal.science/inserm-04059586 ; Association Française des CRO (AFCRO), Jun 2021, Paris, France. pp.S104-S105, ⟨10.1016/j.respe.2021.05.034⟩

مصطلحات موضوعية: Cohorte, Maladie rare, Mucopolysaccharidoses, Traitements, [SDV.SPEE]Life Sciences [q-bio]/Santé publique et épidémiologie, [SDV.GEN.GH]Life Sciences [q-bio]/Genetics/Human genetics

جغرافية الموضوع: Paris, France

Relation: inserm-04059586; https://inserm.hal.science/inserm-04059586

الاتاحة: https://inserm.hal.science/inserm-04059586
https://doi.org/10.1016/j.respe.2021.05.034

المؤلفون: Hollak, C.E.M., Biegstraaten, M., Baumgartner, M.R., Belmatoug, N., Bembi, B., Bosch, A., Brouwers, M., Dekker, H., Dobbelaere, D., Engelen, M., Groenendijk, M.C., Lachmann, R., Langendonk, J.G., Langeveld, M., Linthorst, G., Morava, E., Poll-The, B.T., Rahman, S., Rubio-Gozalbo, M.E., Spiekerkoetter, U., Treacy, E., Wanders, R., Zschocke, J., Hagendijk, R.

المصدر: Hollak , C E M , Biegstraaten , M , Baumgartner , M R , Belmatoug , N , Bembi , B , Bosch , A , Brouwers , M , Dekker , H , Dobbelaere , D , Engelen , M , Groenendijk , M C , Lachmann , R , Langendonk , J G , Langeveld , M , Linthorst , G , Morava , E , Poll-The , B T , Rahman , S , Rubio-Gozalbo , M E , Spiekerkoetter , U , Treacy , E , Wanders , R , Zschocke , J & ....

وصف الملف: application/pdf

Relation: https://dare.uva.nl/personal/pure/en/publications/position-statement-on-the-role-of-healthcare-professionals-patient-organizations-and-industry-in-european-reference-networks(26d4f6fd-8f91-4c8f-91e3-0deb756c0112).html

الاتاحة: https://dare.uva.nl/personal/pure/en/publications/position-statement-on-the-role-of-healthcare-professionals-patient-organizations-and-industry-in-european-reference-networks(26d4f6fd-8f91-4c8f-91e3-0deb756c0112).html
https://doi.org/10.1186/s13023-016-0383-5
https://pure.uva.nl/ws/files/2680856/169156_role_of_healthcare_professionals_patient_organizations_and_industry_in_European_Reference_Networks.pdf