Authors

Steven Laurie
Wouter Steyaert
Elke de Boer
Kiran Polavarapu
Nika Schuermans
Anna K Sommer
German Demidov
Kornelia Ellwanger
Ida Paramonov
Coline Thomas
Stefan Aretz
Jonathan Baets
Elisa Benetti
Gemma Bullich
Patrick F Chinnery
Jill Clayton-Smith
Enzo Cohen
Daniel Danis, The Jackson LaboratoryFollow
Jean-Madeleine de Sainte Agathe
Anne-Sophie Denommé-Pichon
Jordi Diaz-Manera
Stephanie Efthymiou
Laurence Faivre
Marcos Fernandez-Callejo
Mallory Freeberg
José Garcia-Pelaez
Lena Guillot-Noel
Tobias B Haack
Mike Hanna
Holger Hengel
Rita Horvath
Henry Houlden
Adam Jackson
Lennart Johansson
Mridul Johari
Erik-Jan Kamsteeg
Melanie Kellner
Tjitske Kleefstra
Didier Lacombe
Hanns Lochmüller
Estrella López-Martín
Alfons Macaya
Anna Marcé-Grau
Aleš Maver
Heba Morsy
Francesco Muntoni
Francesco Musacchia
Isabelle Nelson
Vincenzo Nigro
Catarina Olimpio
Carla Oliveira
Jaroslava Paulasová Schwabová
Martje G Pauly
Borut Peterlin
Sophia Peters
Rolph Pfundt
Giulio Piluso
Davide Piscia
Manuel Posada
Selina Reich
Alessandra Renieri
Lukas Ryba
Karolis Šablauskas
Marco Savarese
Ludger Schöls
Leon Schütz
Verena Steinke-Lange
Giovanni Stevanin
Volker Straub
Marc Sturm
Morris A Swertz
Marco Tartaglia
Iris B A W Te Paske
Rachel Thompson
Annalaura Torella
Christina Trainor
Bjarne Udd
Liedewei Van de Vondel
Bart van de Warrenburg
Jeroen van Reeuwijk
Jana Vandrovcova
Antonio Vitobello
Janet Vos
Emílie Vyhnálková
Robin Wijngaard
Carlo Wilke
Doreen William
Jishu Xu
Burcu Yaldiz
Luca Zalatnai
Birte Zurek
Solve-RD DITF-GENTURIS
Solve-RD DITF-ITHACA
Solve-RD DITF-EURO-NMD
Solve-RD DITF-RND
Solve-RD consortium
Anthony J Brookes
Teresinha Evangelista
Christian Gilissen
Holm Graessner
Nicoline Hoogerbrugge
Stephan Ossowski
Olaf Riess
Rebecca Schüle
Matthis Synofzik
Alain Verloes
Leslie Matalonga
Han G Brunner
Katja Lohmann
Richarda M de Voer
Ana Töpf
Lisenka E L M Vissers
Sergi Beltran
Alexander Hoischen

Document Type

Article

Publication Date

2-1-2025

Publication Title

Nature medicine

Keywords

JGM, Humans, Rare Diseases, Europe, Male, Genomics, Female, Pedigree, Databases, Genetic, Computational Biology, Genome, Human, Exome

JAX Source

Nat Med. 2025;31(2):478-89.

Volume

31

Issue

2

First Page

478

Last Page

489

ISSN

1546-170X

PMID

39825153

DOI

https://doi.org/10.1038/s41591-024-03420-w

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.

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