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TAND Checklist Can Capture Neurofibromatosis Type 1 Data, Study Says


Both neurofibromatosis type 1 (NF1) and Tuberous Sclerosis Complex (TSC) share similar types of manifestations; researchers hypothesized that the tool would be useful for NF1 in addition to TSC.

A new study is adding to data showing that the Tuberous Sclerosis Associated Neuropsychiatric Disorders (TAND) Checklist is acceptable and feasible in patients with Tuberous Sclerosis Complex (TSC), as well as indicating for the first time that the tool is also able to capture the complexity and neuropsychiatric involvement in neurofibromatosis type 1 (NF1).

Results of the checklist show that NF1 is mainly characterized by attention deficit hyperactivity disorder (ADHD), anxiety problems, and specific learning disorders (SLD) while TSC is mainly associated with autism spectrum disorder.

TSC and NF1 are the most common neurocutaneous disorders and are both generally diagnosed in early childhood and adolescence, consisting of lifelong, multisystem, tumor-prone disorders. Currently, the TAND Checklist is used to quickly screen patients with TSC for various manifestations, including those that are behavioral, psychiatric, intellectual, academic, neuropsychological, and psychosocial.

While the TAND Checklist is traditionally used among patients with TSC, the researchers hypothesized that the tool would also be beneficial for patients with NF1, as the 2 disorders share similar types of manifestations.

The Italian version of the checklist was disseminated to parents of 42 patients with TSC; 13 (30.9%) had no epilepsy; 16 (38.1%) had epilepsy that was not active at the time of the study; and 13 (30.9%) had active epilepsy.

The checklist was also given to 42 age- and sex-matched patients with MF1; 19 (45.2%) had minimal disease; 15 (35.7%) had mild disease; 8 (19.1%) had moderate/severe disease.

The checklist showed that intellectual disability was prevalent among patients with TSC and NF1 (35.6% and 9.5%, respectively), as was SLD (11.9% and 21.4%, respectively).

In addition, patients with TSC and NF1 also had ADHD (50% and 46.6%, respectively), and anxious/mood disorder (16.6% and 33.3%, respectively). The checklist also showed that 33.3% patients with TSC had a formal diagnosis of autism.

The most commonly reported problems among patients with TSC were:

  • Paying attention and concentrating (61.9%)
  • Impulsivity (54.8%)
  • Temper tantrums (54.8%)
  • Anxiety (45.2%)
  • Overactivity/hyperactivity (40.5%)
  • Aggressive outburst (40.5%)
  • Absent or delayed onset of language (40.5%)
  • Repetitive behaviors (35.7%)
  • Academic difficulties (>40%)
  • Deficits in attention (61.9%)
  • Executive skills (50%)

The researchers noted that this observed profile was consistent with results of TAND data coming from the large-scale international TOSCA study.

“Depressed mood, absent or delayed onset of language, repetitive language, difficulties in relationship with peers, repetitive behaviors, spelling mathematics, dual-tasking, visuo-spatial tasks, executive tasks, executive skills, and getting disoriented were significantly different among TSC patients with different epilepsy severity,” wrote the researchers.

Patients with NF1 exhibited similar issues, with the most commonly reported issues being:

  1. Paying attention and concentrating (59.5%)
  2. Impulsivity (52.4%)
  3. Anxiety (50%)
  4. Overactivity/hyperactivity (38.1%)
  5. Temper tantrums (38.1%)
  6. Academic difficulties (>40%)
  7. Deficits in attention (59.5%)
  8. Executive skills (38.1%)

According to the researchers, there were no statistically significant differences based on the severity of NF1.

“The TAND Checklist is acceptable and feasible to complete in a clinic setting, and is able to detect the complexity of neuropsychiatric involvement in NF1, as shown by our results,” wrote the researchers, reflecting on the checklist findings. “It can be integrated into the routine medical appointments of individuals with NF1 and can produce interpretable and actionable results.”

Between the 2 groups, the researchers determined that several manifestations affected patients with TSC more frequently, including aggressive outbursts, absent or delayed onset of language, repetitive language, poor eye contact, repetitive behaviors, getting disoriented, very high level of stress between parents.


Cervi F, Saletti V, Turner K, et al. The TAND checklist: a useful screening tool in children with tuberous sclerosis and neurofibromatosis type 1. Orphanet J Rare Dis. Published online September 7, 2020. doi: 10.1186/s13023-020-01488-4.

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