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@ARTICLE{Laurie:276800,
author = {Laurie, Steven and Steyaert, Wouter and de Boer, Elke and
Polavarapu, Kiran and Schuermans, Nika and Sommer, Anna K
and Demidov, German and Ellwanger, Kornelia and Paramonov,
Ida and Thomas, Coline and Aretz, Stefan and Baets, Jonathan
and Benetti, Elisa and Bullich, Gemma and Chinnery, Patrick
F and Clayton-Smith, Jill and Cohen, Enzo and Danis, Daniel
and de Sainte Agathe, Jean-Madeleine and Denommé-Pichon,
Anne-Sophie and Diaz-Manera, Jordi and Efthymiou, Stephanie
and Faivre, Laurence and Fernandez-Callejo, Marcos and
Freeberg, Mallory and Garcia-Pelaez, José and Guillot-Noel,
Lena and Haack, Tobias B and Hanna, Mike and Hengel, Holger
and Horvath, Rita and Houlden, Henry and Jackson, Adam and
Johansson, Lennart and Johari, Mridul and Kamsteeg, Erik-Jan
and Kellner, Melanie and Kleefstra, Tjitske and Lacombe,
Didier and Lochmüller, Hanns and López-Martín, Estrella
and Macaya, Alfons and Marcé-Grau, Anna and Maver, Aleš
and Morsy, Heba and Muntoni, Francesco and Musacchia,
Francesco and Nelson, Isabelle and Nigro, Vincenzo and
Olimpio, Catarina and Oliveira, Carla and Paulasová
Schwabová, Jaroslava and Pauly, Martje G and Peterlin,
Borut and Peters, Sophia and Pfundt, Rolph and Piluso,
Giulio and Piscia, Davide and Posada, Manuel and Reich,
Selina and Renieri, Alessandra and Ryba, Lukas and
Šablauskas, Karolis and Savarese, Marco and Schöls, Ludger
and Schütz, Leon and Steinke-Lange, Verena and Stevanin,
Giovanni and Straub, Volker and Sturm, Marc and Swertz,
Morris A and Tartaglia, Marco and Te Paske, Iris B A W and
Thompson, Rachel and Torella, Annalaura and Trainor,
Christina and Udd, Bjarne and Van de Vondel, Liedewei and
van de Warrenburg, Bart and van Reeuwijk, Jeroen and
Vandrovcova, Jana and Vitobello, Antonio and Vos, Janet and
Vyhnálková, Emílie and Wijngaard, Robin and Wilke, Carlo
and William, Doreen and Xu, Jishu and Yaldiz, Burcu and
Zalatnai, Luca and Zurek, Birte and Brookes, Anthony J and
Evangelista, Teresinha and Gilissen, Christian and
Graessner, Holm and Hoogerbrugge, Nicoline and Ossowski,
Stephan and Riess, Olaf and Schüle, Rebecca and Synofzik,
Matthis and Verloes, Alain and Matalonga, Leslie and
Brunner, Han G and Lohmann, Katja and de Voer, Richarda M
and Töpf, Ana and Vissers, Lisenka E L M and Beltran, Sergi
and Hoischen, Alexander},
collaboration = {DITF-GENTURIS, Solve-RD and DITF-ITHACA, Solve-RD and
DITF-EURO-NMD, Solve-RD and DITF-RND, Solve-RD and
consortium, Solve-RD},
othercontributors = {de Voer, Richarda M and Te Paske, Iris B A W and de Boer,
Elke and de Sainte Agathe, Jean-Madeleine and Van de Vondel,
Liedewei and van de Warrenburg, Bart and Vissers, Lisenka E
L M},
title = {{G}enomic reanalysis of a pan-{E}uropean rare-disease
resource yields new diagnoses.},
journal = {Nature medicine},
volume = {31},
number = {2},
issn = {1078-8956},
address = {[New York, NY]},
publisher = {Springer Nature},
reportid = {DZNE-2025-00325},
pages = {478 - 489},
year = {2025},
abstract = {Genetic diagnosis of rare diseases requires accurate
identification and interpretation of genomic variants.
Clinical and molecular scientists from 37 expert centers
across Europe created the Solve-Rare Diseases Consortium
(Solve-RD) resource, encompassing clinical, pedigree and
genomic rare-disease data $(94.5\%$ exomes, $5.5\%$
genomes), and performed systematic reanalysis for 6,447
individuals (3,592 male, 2,855 female) with previously
undiagnosed rare diseases from 6,004 families. We
established a collaborative, two-level expert review
infrastructure that allowed a genetic diagnosis in 506
$(8.4\%)$ families. Of 552 disease-causing variants
identified, 464 $(84.1\%)$ were single-nucleotide variants
or short insertions/deletions. These variants were either
located in recently published novel disease genes (n = 67),
recently reclassified in ClinVar (n = 187) or reclassified
by consensus expert decision within Solve-RD (n = 210).
Bespoke bioinformatics analyses identified the remaining
$15.9\%$ of causative variants (n = 88). Ad hoc expert
review, parallel to the systematic reanalysis, diagnosed 249
$(4.1\%)$ additional families for an overall diagnostic
yield of $12.6\%.$ The infrastructure and collaborative
networks set up by Solve-RD can serve as a blueprint for
future further scalable international efforts. The resource
is open to the global rare-disease community, allowing
phenotype, variant and gene queries, as well as genome-wide
discoveries.},
keywords = {Humans / Rare Diseases: genetics / Rare Diseases: diagnosis
/ Europe / Male / Genomics: methods / Female / Pedigree /
Databases, Genetic / Computational Biology: methods /
Genome, Human: genetics / Exome: genetics},
cin = {AG Gasser / AG Schöls},
ddc = {610},
cid = {I:(DE-2719)1210000 / I:(DE-2719)5000005},
pnm = {353 - Clinical and Health Care Research (POF4-353)},
pid = {G:(DE-HGF)POF4-353},
typ = {PUB:(DE-HGF)16},
pubmed = {pmid:39825153},
doi = {10.1038/s41591-024-03420-w},
url = {https://pub.dzne.de/record/276800},
}