Evidence map›Paper›PMID 40346280›Full record

ArticleCalcified tissue international2025

Transition Care for Young Persons with Rare Bone Mineral Conditions: A Consensus Recommendation from the ECTS Rare Bone Disease Action Group.

Corinna Grasemann, Joline Wernsmann, Natasha M Appelman-Dijkstra, Chloe Morgan, Tenna Toft Sylvest, Adalbert Raimann, Heide Siggelkow, Willem F Lems, Serap Turan, M Carola Zillikens and 5 more

Abstract readConsensus Statement
In one paragraph

Article in Calcified tissue international, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
5citing papers in PubMed, 1 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

5 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
  2. Article
  3. Article
  4. Bridging the knowledge gap in rare bone disorders: insights from the APCO Asia-Pacific Rare Bone Disorders Engagement (ASPIRE) survey.Osteoporosis international : a journal established as result of cooperation between the European Foundation for Osteoporosis and the National Osteoporosis Foundation of the USA · 2025
    Article
  5. Review
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

15 authors.

Corinna GrasemannDepartment of Pediatrics, European Reference Network On Rare Endocrine Conditions (ENDO ERN) Reference Center Katholisches Klinikum Bochum, Ruhr-University Bochum, Bochum, Germany. corinna.grasemann@rub.de.ORCID http://orcid.org/0000-0003-1793-4603
Joline WernsmannDepartment of Pediatrics, European Reference Network On Rare Endocrine Conditions (ENDO ERN) Reference Center Katholisches Klinikum Bochum, Ruhr-University Bochum, Bochum, Germany.
Natasha M Appelman-DijkstraSubdivision of Endocrinology, Department of Internal Medicine, Center for Bone Quality, Leiden University Medical Center, Leiden, The Netherlands.ORCID http://orcid.org/0000-0001-5035-127X
Chloe MorganCollege of Human and Health Studies, Swansea University, Swansea, UK.
Tenna Toft SylvestForenklingsstyrelsen and Arhus University, Kopenhagen, Denmark.
Adalbert RaimannDivision of Pediatric Pulmonology, Allergology and Endocrinology, Department of Pediatrics and Adolescent Medicine, Medical University of Vienna, Vienna, Austria.
Heide SiggelkowDepartment of Trauma, Orthopedics and Reconstructive Surgery, University Medical Center Göttingen, Göttingen, Germany.ORCID http://orcid.org/0000-0002-8366-8625
Willem F LemsDepartment of Rheumatology, Amsterdam UMC, Amsterdam, The Netherlands.ORCID http://orcid.org/0000-0002-6885-3953
Serap TuranDivision of Pediatric Endocrinology, Department of Pediatrics, School of Medicine, Marmara University, Istanbul, Turkey.ORCID http://orcid.org/0000-0002-5172-5402
M Carola ZillikensDepartment of Internal Medicine, Erasmus MC, Erasmus University Medical Center, Rotterdam, The Netherlands.ORCID http://orcid.org/0000-0001-9186-3423
Lena Lande WekreTRS National Resource Centre for Rare Disorders, Sunnaas Rehabilitation Hospital, 1453, Nesodden, Oslo, Norway.
Inês AlvesDepartment of Sport and Health, ANDO Portugal, University of Évora-CHRC, Évora, Portugal.
M Cohen SolalDepartment of Rheumatology, Lariboisière Hospital, Inserm U1132 and Université Paris Cité, Paris, France.ORCID http://orcid.org/0000-0002-8582-8258
Maria P YavropoulouFirst Department of Propaedeutic and Internal Medicine, Endocrinology Unit, National and Kapodistrian University of Athens, LAIKO General Hospital of Athens, Athens, Greece.
Gavin ClunieCambridge University Hospitals, Hills Road, Box 204, Cambridge, UK.ORCID http://orcid.org/0000-0001-8411-0685

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Transition care (TC) is crucial for young persons with rare bone and mineral conditions (RBMCs) as they move from pediatric to adult healthcare. Effective TC prevents care disruptions and supports medical and psychosocial needs. However, gaps in communication, a shortage of adult RBMC specialists, and challenges in navigating adult healthcare necessitate standardized care. This study aimed to develop consensus-based recommendations for TC in RBMCs, focusing on best practices for seamless transition and patient empowerment. A two-round Delphi survey (September 2023-April 2024) was conducted among European RBMC experts, including 3 pediatric and 8 adult clinicians and 3 patient representatives from the European Calcified Tissue Society (ECTS). The panel formulated and refined statements through literature review and iterative scoring. Statements reaching ≥ 70% consensus were retained. A total of 81 statements were finalized across seven domains: initiation and planning, TC requirements, patient empowerment, organization and communication, service infrastructure and funding, and clinical care. Consensus was achieved on 64 out of 81 statements, with strong agreement on general and RBMC-specific recommendations. Key priorities included structured coordination among healthcare providers and a patient-centered approach that fosters self-advocacy and self-management. This Delphi consensus provides a structured framework for TC in young persons with RBMCs, emphasizing multidisciplinary care and patient empowerment. Future studies should assess the feasibility and impact of these guidelines across diverse healthcare systems.

Indexed as

Bone DiseasesRare DiseasesTransition to Adult CareAdultDelphi TechniqueHumansAchondroplasiaFragilityOIRare bone mineral conditionsRare diseaseTransitionXLH

Identifiers

PMID40346280
PMCPMC12064599

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.