Evaluating genetic testing methods for rare diseases and familial tumor syndromes

Diagnostic Value of Exome and Genome Sequencing as Well as Conventional Methods in Rare Diseases and Familial Tumor Syndromes

Observational University Hospital Tuebingen · NCT04731857

This study looks at how well new genetic testing methods can help people with rare diseases and their families understand their risk for these conditions.

Quick facts

Study typeObservational
Enrollment12000 (estimated)
SexAll
SponsorUniversity Hospital Tuebingen Academic / other
Locations1 site (Tübingen)
Trial IDNCT04731857 on ClinicalTrials.gov

What this trial studies

This observational study analyzes retrospective data from patients with genetic diseases and their family members who underwent genetic testing between October 2016 and December 2020. The focus is on utilizing next-generation sequencing (NGS) and polygenic risk scores (PRSs) to enhance the understanding of genetic predispositions. By examining approximately 12,000 individual records, the study aims to develop diagnostic algorithms and improve future genetic testing strategies. The findings will contribute to a more robust framework for diagnosing rare diseases and familial tumor syndromes.

Who should consider this trial

Good fit: Ideal candidates include patients diagnosed with genetic diseases and their family members who have undergone genetic analysis during the specified timeframe.

Not a fit: Patients without a genetic disease or those who did not undergo genetic testing during the study period may not benefit from this study.

Why it matters

Potential benefit: If successful, this study could lead to improved diagnostic accuracy and personalized treatment options for patients with rare genetic diseases.

How similar studies have performed: Other studies utilizing next-generation sequencing and polygenic risk scores have shown promise in improving genetic diagnostics, indicating a potential for success in this approach.

Eligibility criteria

Show full inclusion / exclusion criteria
Inclusion Criteria:

* Patient with genetic disease or
* Family members
* Genetic analysis between 10/2016 and 12/2020 at the Institute for Medical Genetics and Applied Genomics at the University Hospital Tübingen

Exclusion Criteria:

\- None

Where this trial is running

Tübingen

Study contacts

How to participate

  1. Review the eligibility criteria above with your treating physician.
  2. Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
  3. Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
Conditions Rare DiseasesGenetic PredispositionNext Generation SequencingPolygenic risk scoresRepeat-ExpansionGenetic variation
Last reviewed 2026-06-13 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.