Tuberous Sclerosis: a disease systematically monitored by the Rare Diseases Registries in Spain

被引：0

作者：

Cavero Carbonell, C. ^{[1
]}

De La Natividad Palomares, M. ^{[1
]}

Botella, P. ^{[2
]}

Zurriaga, O. ^{[1
,2
]}

Guardiola Vilarroig, S. ^{[1
,2
]}

机构：

[1] FISABIO UVEG, Rare Dis Res Unit, Valencia, Spain

[2] Generalitat Valenciana, Publ Hlth Reg Hlth Adm, Valencia, Spain

来源：

EUROPEAN JOURNAL OF PUBLIC HEALTH | 2020年 / 30卷

关键词：

D O I：

暂无

中图分类号：

R1 [预防医学、卫生学];

学科分类号：

1004 ; 120402 ;

摘要：

引用

页数：1

共 50 条

[1] Disease registries in the epidemiological researching of rare diseases in Spain
Zurriaga, Oscar
Martinez Garcia, Carmen
Arizo Luque, Vanessa
Sanchez Perez, Maria Jose
Ramos Aceitero, Julian Mauro
Garcia Blasco, Maria Jose
Ferrari Arroyo, Maria Jose
Perestelo Perez, Lilisbeth
Ramalle Gomara, Enrique
Martinez Frias, Maria Luisa
Posada de la Paz, Manuel
[J]. REVISTA ESPANOLA DE SALUD PUBLICA, 2006, 80 (03): : 249 - 257
[2] Wilson's disease in Spain: validation of sources of information used by the Rare Diseases Registries
Moreno-Marro, Sandra
Barrachina-Bonet, Laia
Paramo-Rodriguez, Lucia
Alonso-Ferreira, Veronica
Guardiola-Vilarroig, Sandra
Vicente, Esther
Garcia-Lopez, Maria
Palomar-Rodriguez, Joaquin
Clara Zoni, Ana
Zurriaga, Oscar
Cavero-Carbonell, Clara
[J]. GACETA SANITARIA, 2021, 35 (06) : 551 - 558
[3] National Rare Disease Registries: overview from Spain
M Posada de la Paz
V Alonso
O Zurriaga
J Astray
JM Aldana-Espinal
MJ Margolles
J Jiménez
JA Palomar
M Santana
E Ramalle-Gomarra
JM Ramos
FE Arribas
R Álamo
G Gutiérrez-Ávila
A Galmés
M García Ribes
C Navarro
M Errezola
ME Ardanaz
A Almansa
P Garcia-Primo
MJ Carroquino
I Abaitua
[J]. Orphanet Journal of Rare Diseases, 9 (Suppl 1)
[4] Pharmacogenetics of everolimus in the treatment of the rare disease tuberous sclerosis
Concha Mayayo, J.
Sanguesa Sanguesa, E.
Pena Segura, J. L.
Ribate Molina, M. P.
Garcia Garcia, C. B.
[J]. EUROPEAN JOURNAL OF HUMAN GENETICS, 2019, 27 : 556 - 557
[5] Tuberous Sclerosis: Unusual Findings in the Setting of a Rare Disease
Oliveira, Ines
Lopes, Rafaela
Cruz, Isabel
Braganca, Bruno
Azevedo, Joao
Andrade, Aurora
[J]. ARQUIVOS BRASILEIROS DE CARDIOLOGIA, 2023, 120 (01)
[6] National rare diseases registry in Spain: pilot study of the Spanish Rare Diseases Registries Research Network (SpainRDR)
Verónica Alonso
Ignacio Abaitua
Óscar Zurriaga
Jenaro Astray
Manuel Errezola
Josefa M Aldana-Espinal
Mario J Margolles
Josep Jiménez
Joaquín A Palomar
Milagrosa Santana
Enrique Ramalle-Gomarra
Julián M Ramos
Federico E Arribas
Rufino Álamo
Gonzalo Gutiérrez-Ávila
Antònia Galmés
Miguel García-Ribes
Carmen Navarro
Eva Ardanaz
Manuel Posada de la Paz
[J]. Orphanet Journal of Rare Diseases, 9 (Suppl 1)
[7] A rare pulmonary lymphangioleiomyomatosis disease in a male with tuberous sclerosis complex
Kabi, Ankita
Panda, Sagarika
Sama, Sonu
Kumar, Subodh
Kaeley, Nidhi
Sogal, Sachin P.
[J]. RESPIRATORY MEDICINE CASE REPORTS, 2020, 31
[8] PATIENT REGISTRIES FOR RARE DISEASES
Deliverska, Mariela
[J]. JOURNAL OF IMAB, 2016, 22 (02): : 1166 - 1168
[9] REGISTRIES, RARE DISEASES, AND RESULTS
WING, AJ
[J]. QUARTERLY JOURNAL OF MEDICINE, 1989, 73 (271): : 983 - 985
[10] Rare manifestations and malignancies in tuberous sclerosis complex: findings from the TuberOus SClerosis registry to increAse disease awareness (TOSCA)
Sauter, Matthias
Belousova, Elena
Benedik, Mirjana P.
Carter, Tom
Cottin, Vincent
Curatolo, Paolo
Dahlin, Maria
D'Amato, Lisa
D'Augeres, Guillaume B.
de Vries, Petrus J.
Ferreira, Jose C.
Feucht, Martha
Fladrowski, Carla
Hertzberg, Christoph
Jozwiak, Sergiusz
Lawson, John A.
Macaya, Alfons
Marques, Ruben
Nabbout, Rima
O'Callaghan, Finbar
Qin, Jiong
Sander, Valentin
Shah, Seema
Takahashi, Yukitoshi
Touraine, Renaud
Youroukos, Sotiris
Zonnenberg, Bernard
Jansen, Anna
Kingswood, J. Chris
[J]. ORPHANET JOURNAL OF RARE DISEASES, 2021, 16 (01)

← 1 2 3 4 5 →