APDS Study - USA - Connecting with APDS Patients/Caregivers

[ThomasRaymond]

Hi Everyone,

Hope you had a great weekend!

Introducing I am Thomas Raymond from The Insights Shop (TIS), a global market research agency specialized in healthcare studies

Currently we have a market research study targeting up to 12 APDS patients in USA. This is a qualitative study where we invite APDS patients to have an individual discussion with a Moderator (IDI) for approx. 75 mins.

So far we have been unlucky with our search for respondents as it’s proven that the incidence of APDS in USA is very low. We’d like to check with you if it’s possible you can help us in any way to connect with potential respondents, either by referring us to your patient/caregiver members or to the HCPs.

The patients themselves will be incentivized for their participations in this study, and we can share with you the screener we use to select the correct participants for this study

Let us know if you can help us for this cause . Thank you

Thomas Raymond

[Newdawn Administrator]

Hi Thomas Raymond,

In order to conduct individual interviews with our members, it’s necessary to seek the permission of the host charity which in this case is the CLL Support Association based in the U.K. This site is the online arm of the charity’s work.

healthunlocked.com/cllsuppo...

I suspect however that there will be very few suitable respondents as so few of our members have a primary immune deficiency. CLL tends to lead to a secondary, acquired immune deficiency for which a percentage of our members receive IVIG internationally.

Please seek permission through the host charity to conduct this outreach work with our members.

Newdawn

[ThomasRaymond in reply to Newdawn]

Hi Newsdawn Team,

Thank you for sharing the above info, may I know who to contact from the CLL Support Association? Preferably the ones in USA

[Newdawn Administrator in reply to ThomasRaymond]

Here are the contact details of the Board of Trustees of the CLLSA. It is a U.K. Charity but through Health Unlocked, operates this international online forum for people affected by CLL/SLL. This includes participants from the USA.

cllsupport.org.uk/contact-us/

Regards,

Newdawn

[ThomasRaymond in reply to Newdawn]

Hi Newdawn Team,

Thank you for sharing the contacts, this should be very useful!

Best regards,

Thomas Raymond

[lankisterguy Volunteer]

Hi ThomasRaymond,

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There are two USA organizations you may want to contact for assistance & publicity for your recruiting:

CLL Society has 41 patient support groups in the USA that meet about once per month and include about 600 CLL patients and caregivers. cllsociety.org/events/

There is also a monthly newsletter that goes out to several thousand CLL patients. cllsociety.org/newsletter-s...

If you wish you can contact Liza Avruch [e-mail]

and sign an agreement that will allow local facilitators share your survey opportunities with our local groups with no advertising fee.

There is a fee for advertising in the newsletter- shown in the agreement.

The agreement has strict rules about contacting members outside of the survey and prohibits reusing our email addresses after we sign up for any specific survey.

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The other is LLS.org lls.org/support-resources

lls.org/article/welcome-lls...

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Len

[Newdawn Administrator in reply to lankisterguy]

Thanks Len, these American based organisations are more likely to be appropriate to their research.

Newdawn

[lankisterguy Volunteer in reply to Newdawn]

Patient surveys seem to be a burgeoning business in the USA. I'm seeing many recruiting efforts and usually payments offered for around $100/ hr. for phone or online video interviews like

savvy.coop/

hivemind.zone/

global-patients.com

and even the NIH (US Public Health) does it but doesn't pay

researchallofus.org/about-t...

databrowser.researchallofus...

Len

[ThomasRaymond in reply to lankisterguy]

Hi Len, thank you for sharing these references, I am grateful for your help