ISHLT Consensus Statement: Telomere Disorders and Lung Transplantation

We’re excited to share groundbreaking news from the International Society for Heart and Lung Transplantation (ISHLT)! For the first time ever, medical providers now have official guidelines for diagnosing and treating short telomere syndrome (STS), better known as Telomere Biology Disorders, in patients with lung disease.

TBDs are underdiagnosed conditions that significantly impact lung disease progression and impact lung transplantation optimization. Until now, there hasn’t been standardized guidance for clinicians treating these patients. These new recommendations fill critical gaps in knowledge and provide a roadmap for better care.

Here’s a brief summary of the key recommendations:

For Diagnosis:

  • Measure telomere length in blood cells (looking for lengths at or below the 10th percentile for age)
  • Consider other TBD signs like early graying, blood cell abnormalities, liver issues, and family history
  • Use genetic testing when available

For Treatment Planning:

  • Patients with suspected TBD-related lung disease should be referred for transplant evaluation early, at the time of diagnosis
  • Use caution with immunosuppressive treatments before transplant
  • All lung transplant candidates should be screened for TBDs when possible

For Pre-Transplant Evaluation:

  • Comprehensive screening should include blood, liver, heart, and bone evaluations
  • Cancer screening appropriate for the patient’s age
  • Genetic counseling and sequencing if TBD is suspected
  • Consultation with specialists (hematologists for blood issues, hepatologists for liver concerns)

For Post-Transplant Care:

  • Careful monitoring for wound healing complications
  • Regular liver function monitoring and imaging
  • Close dermatologic surveillance for skin cancers
  • Monitoring for herpesvirus infections (CMV and EBV)
  • Standard rejection surveillance protocols

These guidelines represent a major step forward in recognizing and properly managing TBDs in the context of lung disease. By standardizing diagnosis and care approaches, these recommendations will help ensure that patients with short telomeres receive appropriate, expert care throughout their treatment journey. This consensus statement acknowledges the unique challenges TBD patients face, and provides clinicians with the tools to deliver better, more informed care.

For patients and families navigating TBD-related lung disease, these guidelines mean your medical team now has clear, expert-backed recommendations to guide your care decisions.

Read the full consensus statement here: https://www.ishlt.org/docs/default-source/standards-guidelines/2026_consensusdocument_shorttelomeresyndromeinltx.pdf?sfvrsn=3955dc0_1