Nuvalent ROS1+ Non-Small Cell Lung Cancer Patient Experience Survey

This survey is being conducted by Nuvalent, a clinical-stage biopharmaceutical company to gain better understanding into the experience of people living with Advanced ROS1+ Non-Small Cell Lung Cancer (NSCLC). This volunteer survey is anonymous and will be used internally to inform the kinds of resources and educational materials we develop for patients, care partners, and healthcare providers. There are 24 multiple choice, open ended, and rank questions in this survey.

We appreciate your time!

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* 1. What is your current age?

Under 30

31-40

41-50

51-60

61-70

Over 70

Prefer not to disclose

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* 2. Which of the following describe your day-to-day responsibilities? Check all that apply.

Taking care of dependents/children who live with you

Working about the same as before my diagnosis

Working less than before, due to my cancer

Stopped working due to my cancer

Did not work or retired prior to cancer diagnosis

Prefer not to disclose

None of the above

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* 3. How long ago were you diagnosed with ROS1+ NSCLC?

Less than 6 months

6 months-1 year

1-3 years

Over 3 years

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* 4. After you received a diagnosis of lung cancer, how long did it take for you to learn the results of biomarker testing that showed your cancer had a ROS1 mutation?

2 weeks or less

2-4 weeks

4 weeks or more

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* 5. How many different types of systematic treatments have you received for treating your cancer, also known as lines of therapy (not including surgery or radiation)? This includes treatments like chemotherapy, targeted therapy, and immunotherapy. Treatments given to manage symptoms and side effects should not be included.

Surgery and radiation only

1 systematic therapy

2 systematic therapies

3 or more systematic therapies

4 or more systematic therapies

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* 6. Please list any and all companies that you are familiar with who manufacture or are currently developing therapies for advanced ROS1+ NSCLC. Please answer before moving on and do not change it after reading additional questions.

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* 7. Please list any and all treatments/medicines that you are familiar with for advanced ROS1+ NSCLC. Please answer before moving on and do not change it after reading additional questions.

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* 8. Which statement BEST describes your goals of treatment?

I want to live as long as possible, regardless of side effects

I want to maximize my quality of life and minimize side effects

I want to balance my length and quality of life

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* 9. Which statement most reflects how you decided about cancer treatment when you were first diagnosed with ROS1+ NSCLC?

My doctor told me what the best option was for me with limited discussion on options

We discussed multiple options and my goals of therapy, and my doctor made a recommendation based on that

My doctor outlined the pros and cons of multiple therapies and let me pick based on my needs and goals of therapy

I shared information with my doctor regarding ROS1 treatments that I had heard about

Other (please specify)

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* 10. If you did not participate in your treatment decision, why not? Check all that apply.

I did not feel comfortable speaking up when meeting with my doctor

I did not know what questions to ask or topics to bring up

I didn’t feel like my doctor listened when I tried to speak up

I did participate and this was not an issue

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* 11. Did your doctor discuss any of the following when selecting a new therapy? Check all that apply.

Therapeutic effect on brain metastasis (ability to treat cancer in the brain and/or stop it from spreading there)

Resistance mutations (genetic changes in the cancer cell that lead to the drug being less effective)

Targeted nature of the therapy and how it may relate to side effects

Ability to shrink the tumor or make it disappear

Durability of therapeutic efficacy (how long until the cancer grows or spreads)

Side effects/tolerability

Quality of life

Discussion about next steps if therapy was poorly tolerated or did not show benefit

None of the above

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* 12. In the past 3 months, to what extent have neurologic or central nervous system (CNS) side effects (dizziness, mood changes, confusion, hallucinations) that you’ve experienced had a negative impact on your day-to-day life?

I have not had CNS side effects

No negative impact

Minor negative impact

Moderate negative impact

Significant negative impact

Very significant negative impact

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* 13. In the past 3 months, to what extent have any other side effects you’ve experienced (fatigue, diarrhea, nausea, weight gain, etc.) had a negative impact on your day-to-day life?

I have not had other side effects

No negative impact

Minor negative impact

Moderate negative impact

Significant negative impact

Very significant negative impact

For questions 14-17, please RANK the options in order with 1 being the highest or most desirable choice. Please only assign a number once for each question. Please note that all options must be ranked, including “other.” If you do not have an “other” in mind, please rank this option "least".

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* 14. What keeps you going/motivated in your treatment journey? Please rank in order of importance from 1-6 with 1 being the MOST important and 6 being the LEAST important. Please note that all options must be ranked, including “other.” If you do not have an “other” in mind, please rank this option "least".

	1 Most important	2	3	4	5	6 Least important
My family	My family 1 Most important	My family 2	My family 3	My family 4	My family 5	My family 6 Least important
My friends	My friends 1 Most important	My friends 2	My friends 3	My friends 4	My friends 5	My friends 6 Least important
Special future milestone I want to be a part of	Special future milestone I want to be a part of 1 Most important	Special future milestone I want to be a part of 2	Special future milestone I want to be a part of 3	Special future milestone I want to be a part of 4	Special future milestone I want to be a part of 5	Special future milestone I want to be a part of 6 Least important
My career	My career 1 Most important	My career 2	My career 3	My career 4	My career 5	My career 6 Least important
Hobbies & enrichment activities	Hobbies & enrichment activities 1 Most important	Hobbies & enrichment activities 2	Hobbies & enrichment activities 3	Hobbies & enrichment activities 4	Hobbies & enrichment activities 5	Hobbies & enrichment activities 6 Least important
Other	Other 1 Most important	Other 2	Other 3	Other 4	Other 5	Other 6 Least important

Other (please specify)

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* 15. What are the most important factors to you when choosing a treatment? Please rank in order of importance with 1 being the MOST important and 6 being the LEAST important. Please note that all options must be ranked, including “other.” If you do not have an “other” in mind, please rank this option "least".

	1 Most important	2	3	4	5	6 Least important
Quality of life	Quality of life 1 Most important	Quality of life 2	Quality of life 3	Quality of life 4	Quality of life 5	Quality of life 6 Least important
Effectiveness	Effectiveness 1 Most important	Effectiveness 2	Effectiveness 3	Effectiveness 4	Effectiveness 5	Effectiveness 6 Least important
Doctor’s recommendation	Doctor’s recommendation 1 Most important	Doctor’s recommendation 2	Doctor’s recommendation 3	Doctor’s recommendation 4	Doctor’s recommendation 5	Doctor’s recommendation 6 Least important
Side effects	Side effects 1 Most important	Side effects 2	Side effects 3	Side effects 4	Side effects 5	Side effects 6 Least important
Treatment accessibility (location, cost, insurance coverage)	Treatment accessibility (location, cost, insurance coverage) 1 Most important	Treatment accessibility (location, cost, insurance coverage) 2	Treatment accessibility (location, cost, insurance coverage) 3	Treatment accessibility (location, cost, insurance coverage) 4	Treatment accessibility (location, cost, insurance coverage) 5	Treatment accessibility (location, cost, insurance coverage) 6 Least important
Other	Other 1 Most important	Other 2	Other 3	Other 4	Other 5	Other 6 Least important

Other (please specify)

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* 16. Which of the following do you feel is the greatest need for people living with lung cancer? Please rank in order of importance with 1 being the MOST important and 6 being the LEAST important. Please note that all options must be ranked, including “other.” If you do not have an “other” in mind, please rank this option "least".

	1 Most important	2	3	4	5	6 Least important
More affordable treatment options	More affordable treatment options 1 Most important	More affordable treatment options 2	More affordable treatment options 3	More affordable treatment options 4	More affordable treatment options 5	More affordable treatment options 6 Least important
More effective treatment options	More effective treatment options 1 Most important	More effective treatment options 2	More effective treatment options 3	More effective treatment options 4	More effective treatment options 5	More effective treatment options 6 Least important
Safer treatments that provide a better quality of life	Safer treatments that provide a better quality of life 1 Most important	Safer treatments that provide a better quality of life 2	Safer treatments that provide a better quality of life 3	Safer treatments that provide a better quality of life 4	Safer treatments that provide a better quality of life 5	Safer treatments that provide a better quality of life 6 Least important
Better patient support	Better patient support 1 Most important	Better patient support 2	Better patient support 3	Better patient support 4	Better patient support 5	Better patient support 6 Least important
Better patient education	Better patient education 1 Most important	Better patient education 2	Better patient education 3	Better patient education 4	Better patient education 5	Better patient education 6 Least important
Other	Other 1 Most important	Other 2	Other 3	Other 4	Other 5	Other 6 Least important

Other (please specify)

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* 17. Which of the following methods do you prefer to use when receiving health-related information? Please rank in order of preference, with 1 being the MOST preferred and 8 being the LEAST preferred. Please note that all options must be ranked, including “other.” If you do not have an “other” in mind, please rank this option "least".

	1 Most preferred	2	3	4	5	6	7	8 Least preferred
Email	Email 1 Most preferred	Email 2	Email 3	Email 4	Email 5	Email 6	Email 7	Email 8 Least preferred
Text (SMS)	Text (SMS) 1 Most preferred	Text (SMS) 2	Text (SMS) 3	Text (SMS) 4	Text (SMS) 5	Text (SMS) 6	Text (SMS) 7	Text (SMS) 8 Least preferred
Social media	Social media 1 Most preferred	Social media 2	Social media 3	Social media 4	Social media 5	Social media 6	Social media 7	Social media 8 Least preferred
Video content	Video content 1 Most preferred	Video content 2	Video content 3	Video content 4	Video content 5	Video content 6	Video content 7	Video content 8 Least preferred
Infographics (digital or print)	Infographics (digital or print) 1 Most preferred	Infographics (digital or print) 2	Infographics (digital or print) 3	Infographics (digital or print) 4	Infographics (digital or print) 5	Infographics (digital or print) 6	Infographics (digital or print) 7	Infographics (digital or print) 8 Least preferred
Print materials (e.g., brochures, flyers)	Print materials (e.g., brochures, flyers) 1 Most preferred	Print materials (e.g., brochures, flyers) 2	Print materials (e.g., brochures, flyers) 3	Print materials (e.g., brochures, flyers) 4	Print materials (e.g., brochures, flyers) 5	Print materials (e.g., brochures, flyers) 6	Print materials (e.g., brochures, flyers) 7	Print materials (e.g., brochures, flyers) 8 Least preferred
Digital downloadables (e.g., PDF guides)	Digital downloadables (e.g., PDF guides) 1 Most preferred	Digital downloadables (e.g., PDF guides) 2	Digital downloadables (e.g., PDF guides) 3	Digital downloadables (e.g., PDF guides) 4	Digital downloadables (e.g., PDF guides) 5	Digital downloadables (e.g., PDF guides) 6	Digital downloadables (e.g., PDF guides) 7	Digital downloadables (e.g., PDF guides) 8 Least preferred
Other	Other 1 Most preferred	Other 2	Other 3	Other 4	Other 5	Other 6	Other 7	Other 8 Least preferred

Other (please specify)

For questions 18-22, please RATE each option with 5 being the highest or most desirable choice. You may choose to rate multiple options the same or different numbers.

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* 18. Please rate the following sources of information on a scale of 1-5 based on how frequently you use them to learn about lung cancer treatment options, with 5 being the MOST frequent and 1 being the LEAST frequent. Please use 0 if you have never heard of the source.

	0 Have not heard of	1 Less frequent	2	3	4	5 More frequent
Lung cancer advocacy groups globally and in the US (LUNGevity, Lung Cancer Europe, etc.), including their web pages, social media, etc.	Lung cancer advocacy groups globally and in the US (LUNGevity, Lung Cancer Europe, etc.), including their web pages, social media, etc. 0 Have not heard of	Lung cancer advocacy groups globally and in the US (LUNGevity, Lung Cancer Europe, etc.), including their web pages, social media, etc. 1 Less frequent	Lung cancer advocacy groups globally and in the US (LUNGevity, Lung Cancer Europe, etc.), including their web pages, social media, etc. 2	Lung cancer advocacy groups globally and in the US (LUNGevity, Lung Cancer Europe, etc.), including their web pages, social media, etc. 3	Lung cancer advocacy groups globally and in the US (LUNGevity, Lung Cancer Europe, etc.), including their web pages, social media, etc. 4	Lung cancer advocacy groups globally and in the US (LUNGevity, Lung Cancer Europe, etc.), including their web pages, social media, etc. 5 More frequent
Disease-specific patient groups (The ROS1ders, ALK Positive, etc.)	Disease-specific patient groups (The ROS1ders, ALK Positive, etc.) 0 Have not heard of	Disease-specific patient groups (The ROS1ders, ALK Positive, etc.) 1 Less frequent	Disease-specific patient groups (The ROS1ders, ALK Positive, etc.) 2	Disease-specific patient groups (The ROS1ders, ALK Positive, etc.) 3	Disease-specific patient groups (The ROS1ders, ALK Positive, etc.) 4	Disease-specific patient groups (The ROS1ders, ALK Positive, etc.) 5 More frequent
SurvivorNet	SurvivorNet 0 Have not heard of	SurvivorNet 1 Less frequent	SurvivorNet 2	SurvivorNet 3	SurvivorNet 4	SurvivorNet 5 More frequent
Cancer.gov	Cancer.gov 0 Have not heard of	Cancer.gov 1 Less frequent	Cancer.gov 2	Cancer.gov 3	Cancer.gov 4	Cancer.gov 5 More frequent
American Cancer Society website	American Cancer Society website 0 Have not heard of	American Cancer Society website 1 Less frequent	American Cancer Society website 2	American Cancer Society website 3	American Cancer Society website 4	American Cancer Society website 5 More frequent
The Patient Story, webpage and YouTube channel	The Patient Story, webpage and YouTube channel 0 Have not heard of	The Patient Story, webpage and YouTube channel 1 Less frequent	The Patient Story, webpage and YouTube channel 2	The Patient Story, webpage and YouTube channel 3	The Patient Story, webpage and YouTube channel 4	The Patient Story, webpage and YouTube channel 5 More frequent
NCCN Guidelines for Patients	NCCN Guidelines for Patients 0 Have not heard of	NCCN Guidelines for Patients 1 Less frequent	NCCN Guidelines for Patients 2	NCCN Guidelines for Patients 3	NCCN Guidelines for Patients 4	NCCN Guidelines for Patients 5 More frequent
WebMD	WebMD 0 Have not heard of	WebMD 1 Less frequent	WebMD 2	WebMD 3	WebMD 4	WebMD 5 More frequent
UpToDate	UpToDate 0 Have not heard of	UpToDate 1 Less frequent	UpToDate 2	UpToDate 3	UpToDate 4	UpToDate 5 More frequent
MedlinePlus	MedlinePlus 0 Have not heard of	MedlinePlus 1 Less frequent	MedlinePlus 2	MedlinePlus 3	MedlinePlus 4	MedlinePlus 5 More frequent
Resources from your cancer center where you receive treatment	Resources from your cancer center where you receive treatment 0 Have not heard of	Resources from your cancer center where you receive treatment 1 Less frequent	Resources from your cancer center where you receive treatment 2	Resources from your cancer center where you receive treatment 3	Resources from your cancer center where you receive treatment 4	Resources from your cancer center where you receive treatment 5 More frequent
Outcomes4Me	Outcomes4Me 0 Have not heard of	Outcomes4Me 1 Less frequent	Outcomes4Me 2	Outcomes4Me 3	Outcomes4Me 4	Outcomes4Me 5 More frequent
Medlive	Medlive 0 Have not heard of	Medlive 1 Less frequent	Medlive 2	Medlive 3	Medlive 4	Medlive 5 More frequent
Drugs.com	Drugs.com 0 Have not heard of	Drugs.com 1 Less frequent	Drugs.com 2	Drugs.com 3	Drugs.com 4	Drugs.com 5 More frequent
YouTube (general searches)	YouTube (general searches) 0 Have not heard of	YouTube (general searches) 1 Less frequent	YouTube (general searches) 2	YouTube (general searches) 3	YouTube (general searches) 4	YouTube (general searches) 5 More frequent
Clinicaltrials.gov	Clinicaltrials.gov 0 Have not heard of	Clinicaltrials.gov 1 Less frequent	Clinicaltrials.gov 2	Clinicaltrials.gov 3	Clinicaltrials.gov 4	Clinicaltrials.gov 5 More frequent
CancerGRACE	CancerGRACE 0 Have not heard of	CancerGRACE 1 Less frequent	CancerGRACE 2	CancerGRACE 3	CancerGRACE 4	CancerGRACE 5 More frequent
TikTok	TikTok 0 Have not heard of	TikTok 1 Less frequent	TikTok 2	TikTok 3	TikTok 4	TikTok 5 More frequent
Facebook	Facebook 0 Have not heard of	Facebook 1 Less frequent	Facebook 2	Facebook 3	Facebook 4	Facebook 5 More frequent

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* 19. What resources or education would be most helpful to you? Please rate each option on a scale of 1 to 5 with 5 being the MOST helpful and 1 being the LEAST helpful. Please note that all options must be rated, including “other.” If you do not have an “other” in mind, please rate this option "less".

	1 Less helpful	2	3	4	5 More helpful
Education on treatment options	Education on treatment options 1 Less helpful	Education on treatment options 2	Education on treatment options 3	Education on treatment options 4	Education on treatment options 5 More helpful
Comprehensive education on my disease	Comprehensive education on my disease 1 Less helpful	Comprehensive education on my disease 2	Comprehensive education on my disease 3	Comprehensive education on my disease 4	Comprehensive education on my disease 5 More helpful
Caregiver-specific support	Caregiver-specific support 1 Less helpful	Caregiver-specific support 2	Caregiver-specific support 3	Caregiver-specific support 4	Caregiver-specific support 5 More helpful
Connections to support groups (online or in person)	Connections to support groups (online or in person) 1 Less helpful	Connections to support groups (online or in person) 2	Connections to support groups (online or in person) 3	Connections to support groups (online or in person) 4	Connections to support groups (online or in person) 5 More helpful
Financial assistance programs	Financial assistance programs 1 Less helpful	Financial assistance programs 2	Financial assistance programs 3	Financial assistance programs 4	Financial assistance programs 5 More helpful
Support in navigating health insurance	Support in navigating health insurance 1 Less helpful	Support in navigating health insurance 2	Support in navigating health insurance 3	Support in navigating health insurance 4	Support in navigating health insurance 5 More helpful
Support in managing treatment and side effects, especially when starting a new treatment	Support in managing treatment and side effects, especially when starting a new treatment 1 Less helpful	Support in managing treatment and side effects, especially when starting a new treatment 2	Support in managing treatment and side effects, especially when starting a new treatment 3	Support in managing treatment and side effects, especially when starting a new treatment 4	Support in managing treatment and side effects, especially when starting a new treatment 5 More helpful
Support in staying on treatment long-term	Support in staying on treatment long-term 1 Less helpful	Support in staying on treatment long-term 2	Support in staying on treatment long-term 3	Support in staying on treatment long-term 4	Support in staying on treatment long-term 5 More helpful
Help in understanding what are clinical trials	Help in understanding what are clinical trials 1 Less helpful	Help in understanding what are clinical trials 2	Help in understanding what are clinical trials 3	Help in understanding what are clinical trials 4	Help in understanding what are clinical trials 5 More helpful
Help in understanding what clinical trials are available	Help in understanding what clinical trials are available 1 Less helpful	Help in understanding what clinical trials are available 2	Help in understanding what clinical trials are available 3	Help in understanding what clinical trials are available 4	Help in understanding what clinical trials are available 5 More helpful
Psychosocial/emotional & mental health support	Psychosocial/emotional & mental health support 1 Less helpful	Psychosocial/emotional & mental health support 2	Psychosocial/emotional & mental health support 3	Psychosocial/emotional & mental health support 4	Psychosocial/emotional & mental health support 5 More helpful
Other	Other 1 Less helpful	Other 2	Other 3	Other 4	Other 5 More helpful

Other (please specify)

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* 20. On a scale of 1-5, with 5 being VERY familiar and 1 being NOT familiar, how familiar are you with the following companies? Please answer based on your existing awareness of these companies prior to the survey.

	1 Not familiar	2	3	4	5 Very familiar
Genentech	Genentech 1 Not familiar	Genentech 2	Genentech 3	Genentech 4	Genentech 5 Very familiar
Nuvalent	Nuvalent 1 Not familiar	Nuvalent 2	Nuvalent 3	Nuvalent 4	Nuvalent 5 Very familiar
Pfizer	Pfizer 1 Not familiar	Pfizer 2	Pfizer 3	Pfizer 4	Pfizer 5 Very familiar
Bristol Myers Squibb and/or Turning Point Therapeutics	Bristol Myers Squibb and/or Turning Point Therapeutics 1 Not familiar	Bristol Myers Squibb and/or Turning Point Therapeutics 2	Bristol Myers Squibb and/or Turning Point Therapeutics 3	Bristol Myers Squibb and/or Turning Point Therapeutics 4	Bristol Myers Squibb and/or Turning Point Therapeutics 5 Very familiar
Novartis	Novartis 1 Not familiar	Novartis 2	Novartis 3	Novartis 4	Novartis 5 Very familiar
Nuvation Bio and/or AnHeart Therapeutics	Nuvation Bio and/or AnHeart Therapeutics 1 Not familiar	Nuvation Bio and/or AnHeart Therapeutics 2	Nuvation Bio and/or AnHeart Therapeutics 3	Nuvation Bio and/or AnHeart Therapeutics 4	Nuvation Bio and/or AnHeart Therapeutics 5 Very familiar

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* 21. Please rate your PERCEPTION of the therapies for ROS1+ NSCLC. Your perception can be based on your own experience or from what you have heard from others. Please rate on a scale of 1-5 with 5 being the MOST favorable perception and 1 being the LEAST favorable perception. Please use 0 to indicate that you are UNFAMILIAR with the therapy and have no perception.

	0 Unfamiliar	1 Least favorable perception	2	3	4	5 Most favorable perception
Crizotinib also known as Xalkori	Crizotinib also known as Xalkori 0 Unfamiliar	Crizotinib also known as Xalkori 1 Least favorable perception	Crizotinib also known as Xalkori 2	Crizotinib also known as Xalkori 3	Crizotinib also known as Xalkori 4	Crizotinib also known as Xalkori 5 Most favorable perception
Entrectinib also known as Rozlytrek	Entrectinib also known as Rozlytrek 0 Unfamiliar	Entrectinib also known as Rozlytrek 1 Least favorable perception	Entrectinib also known as Rozlytrek 2	Entrectinib also known as Rozlytrek 3	Entrectinib also known as Rozlytrek 4	Entrectinib also known as Rozlytrek 5 Most favorable perception
Ceritinib also known as Zykadia	Ceritinib also known as Zykadia 0 Unfamiliar	Ceritinib also known as Zykadia 1 Least favorable perception	Ceritinib also known as Zykadia 2	Ceritinib also known as Zykadia 3	Ceritinib also known as Zykadia 4	Ceritinib also known as Zykadia 5 Most favorable perception
Lorlatinib also known as Lorbrena	Lorlatinib also known as Lorbrena 0 Unfamiliar	Lorlatinib also known as Lorbrena 1 Least favorable perception	Lorlatinib also known as Lorbrena 2	Lorlatinib also known as Lorbrena 3	Lorlatinib also known as Lorbrena 4	Lorlatinib also known as Lorbrena 5 Most favorable perception
Repotrectinib also known as Augtyro	Repotrectinib also known as Augtyro 0 Unfamiliar	Repotrectinib also known as Augtyro 1 Least favorable perception	Repotrectinib also known as Augtyro 2	Repotrectinib also known as Augtyro 3	Repotrectinib also known as Augtyro 4	Repotrectinib also known as Augtyro 5 Most favorable perception

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* 22. On a scale of 1-5, with 5 being VERY familiar and 1 being NOT familiar, how familiar are you with the following therapies in development for ROS1+ NSCLC?

	1 Not familiar	2	3	4	5 Very familiar
Taletrectinib also known as Ibtrozi	Taletrectinib also known as Ibtrozi 1 Not familiar	Taletrectinib also known as Ibtrozi 2	Taletrectinib also known as Ibtrozi 3	Taletrectinib also known as Ibtrozi 4	Taletrectinib also known as Ibtrozi 5 Very familiar
NVL-520 also known as Zidesamtinib	NVL-520 also known as Zidesamtinib 1 Not familiar	NVL-520 also known as Zidesamtinib 2	NVL-520 also known as Zidesamtinib 3	NVL-520 also known as Zidesamtinib 4	NVL-520 also known as Zidesamtinib 5 Very familiar

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* 23. What have you learned that you wish you would have known within the first few days of your diagnosis? Please share aspects not focused on specific side effects or adverse events you may have experienced.

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* 24. What are some words that you would use to describe your experience since diagnosis? Please choose up to 3 words that are not focused on specific side effects or adverse events you may have experienced.

Thank you for taking the time to answer our questions!

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