Coding systems and monitoring practices across the ERN ReCONNET: insights from a comprehensive survey and unmet needs.

Bandeira M, Marinello D, Barreira SC, Richter JG, de Vries-Bouwstra JK, Lundberg IE, Pamfil C, Cornet A, Mosca M, Rath A, Triggiani M, Simonini G, Ferraris A, Solecka W, Lanzillotta M, Regola F, Vencovský J, Sobanski V, Bucșa C, Tsang-A-Sjoe M, Závada J, Del Papa N, Brkic Z, Hunzelmann N, Haase I, Frank C, Smith V, Talarico R, Fonseca JE, Schneider M.

Open source

DOI: 10.1186/s13023-026-04304-7
Published: 2026-03-30
Container: Orphanet J Rare Dis
Publisher: Not recorded
Open access: yes

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Cite this work

BibTeX

@article{allodium:10.1186/s13023-026-04304-7,
  title = {Coding systems and monitoring practices across the ERN ReCONNET: insights from a comprehensive survey and unmet needs.},
  author = {Bandeira M and  Marinello D and  Barreira SC and  Richter JG and  de Vries-Bouwstra JK and  Lundberg IE and  Pamfil C and  Cornet A and  Mosca M and  Rath A and  Triggiani M and  Simonini G and  Ferraris A and  Solecka W and  Lanzillotta M and  Regola F and  Vencovský J and  Sobanski V and  Bucșa C and  Tsang-A-Sjoe M and  Závada J and  Del Papa N and  Brkic Z and  Hunzelmann N and  Haase I and  Frank C and  Smith V and  Talarico R and  Fonseca JE and  Schneider M.},
  year = {2026},
  journal = {Orphanet J Rare Dis},
  doi = {10.1186/s13023-026-04304-7},
  url = {https://doi.org/10.1186/s13023-026-04304-7}
}

RIS

TY  - JOUR
TI  - Coding systems and monitoring practices across the ERN ReCONNET: insights from a comprehensive survey and unmet needs.
AU  - Bandeira M
AU  -  Marinello D
AU  -  Barreira SC
AU  -  Richter JG
AU  -  de Vries-Bouwstra JK
AU  -  Lundberg IE
AU  -  Pamfil C
AU  -  Cornet A
AU  -  Mosca M
AU  -  Rath A
AU  -  Triggiani M
AU  -  Simonini G
AU  -  Ferraris A
AU  -  Solecka W
AU  -  Lanzillotta M
AU  -  Regola F
AU  -  Vencovský J
AU  -  Sobanski V
AU  -  Bucșa C
AU  -  Tsang-A-Sjoe M
AU  -  Závada J
AU  -  Del Papa N
AU  -  Brkic Z
AU  -  Hunzelmann N
AU  -  Haase I
AU  -  Frank C
AU  -  Smith V
AU  -  Talarico R
AU  -  Fonseca JE
AU  -  Schneider M.
PY  - 2026
JO  - Orphanet J Rare Dis
DO  - 10.1186/s13023-026-04304-7
UR  - https://doi.org/10.1186/s13023-026-04304-7
ER  -

APA

M, B., D, M., SC, B., JG, R., JK, D. V., IE, L., C, P., A, C., M, M., A, R., M, T., G, S., A, F., W, S., M, L., F, R., J, V., V, S., C, B., M, T., J, Z., N, D. P., Z, B., N, H., I, H., C, F., V, S., R, T., JE, F., & M., S. (2026). Coding systems and monitoring practices across the ERN ReCONNET: insights from a comprehensive survey and unmet needs.. Orphanet J Rare Dis. https://doi.org/10.1186/s13023-026-04304-7

Source records

europe-pmc · retrieved 2026-09-26T02:28:55.712Z
doaj · retrieved 2026-09-26T02:28:55.724Z